arrow107 Comments
  1. Tom Kindlon
    Jan 23 - 4:01 pm

    Thanks for the summary, Cort.

    Regarding:
    “She proposed the mitochondria may have switched themselves off during bed rest and then, for whatever reason, have not been able to turn themselves back on again.”
    I’m not convinced by this. In my own case, as people in our house didn’t tend to go to bed when ill, I didn’t either. The longest I might have spent in the house (not bed) in the first five years of my illness was probably two days. Yet in the final year of that time I gradually got worse and worse.
    Similarly my orthostatic intolerance decreased over that final year. I was “on my feet” but got worse and worse.

  2. Tom Kindlon
    Jan 23 - 4:04 pm

    Just a warning to people that adverse reactions have been reported with graded activity/exercise programs in ME/CFS.

    I wrote about the issue in my paper:

    Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME. 2011;19(2):59-111. Free full text at: http://iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx

  3. Sasha
    Jan 23 - 4:09 pm

    Thanks, Cort – I’ve been looking forward to hearing about this. I’ve posted a link on Phoenix Rising.

    I don’t know what to make of this. I have a lot of respect for Dr Klimas and the anaerobic threshold work coming out of Staci Stevens’s lab has been intriguing, but frustrating if you don’t have access to that kind of testing.

    I’d like to see data on this, in a study of patients following Dr Klimas’s protocol – is there a formal study that she’s doing?

    I’d also like to see a set of instructions for patients to follow who want to try it.

    Like you, I’m looking at this through the filter of my own experience and not seeing a good fit but since it does seem like a very low-activity programme I’d like to attempt it and see if I can benefit.

    I hope Dr Klimas can be encouraged to make some very clear, quotable statements about what she is and is not saying because in the UK at least, any suggestion that we’ll all just do great if we ‘exercise’ is going to get patients killed (I’m not kidding) by the psych lobby using that to push GET even harder via the NHS. I hope someone might put that point to her at the January 26th meeting.

    • Cort Johnson
      Jan 23 - 4:56 pm

      Its a tricky subject…You definitely want to avoid deconditioning if you can – that’s important….and you don’t want to push yourself into becoming bedridden by overdoing it.

      This isn’t GET, that’s for sure…it’s way too gentle and slow for GET and with the emphasis on heart rate testing the program probably has alot of people cut back….I think most people who take these tests are surprised at how quickly they go into anerobic functioning…

      There are some video’s on these exercises – you can access them through some of the links…They’re on the ME/CFS Community Center/CFS Knowledge Center website by Dan Moricoli…I had trouble getting into the site or I would have linked directly to them.

      • Sasha
        Jan 23 - 5:10 pm

        I agree, it’s not GET by a million miles – if anything it’s the reverse – but the word ‘exercise’ is in there and there’s an enormous risk that patients are going to get even more of a kicking in the media and from the psych lobby than we already do. We need a clear, quotable, one- or two-sentence statement from Dr Klimas that she’s not using ‘exercise’ in the usual sense and that her approach is a million miles away from GET.

        There is huge pressure on patients in the UK to comply with GET and it is damaging to patients’ health, as shown by the MEA’s survey and yet the PACE trial is being spun and pushed at doctors as the way forward. The situation for patients here is already desperate. We – and Dr Klimas – need protection against her work being subverted and used to harm patients.

        Thanks for that pointer to Dan Moricoli’s stuff, I’ll take a look.

        • Cort Johnson
          Jan 23 - 5:18 pm

          I’ll try and get that quote…She’s quite good at making very quotable comments :)

        • Sasha
          Jan 23 - 5:26 pm

          Here’s the link to Dan Moricoli’s Exercise Group on cfsknowledgecenter:

          http://cfsknowledgecenter.ning.com/group/theexercisegroup

          You have to register to see it – very easy.

  4. Sasha
    Jan 23 - 4:24 pm

    I’d really like to see Dr Klimas/Connie Sol publish on the net some appropriate exercises for this programme. Although they say it’s important not to stand and things like yoga are good, it would be really helpful to have specific exercises. I find it hard to raise my arms above my head for any length of time and apparently this is common in people with OI – but raising your arms is a pretty common manoeuvre in yoga.

    Cort, would you consider making a list of patients’ questions and interviewing Dr Klimas about this at some future point? I think it’s very important that on this contentious issue of ‘exercise’ where there is so much room for misunderstanding, we have good lines of communication open.

    I’m extremely grateful for all the work that Dr Klimas has done for us over the years and if patients – even just a subset – can benefit from this, it would be great.

    • Cort Johnson
      Jan 23 - 4:57 pm

      Love to have questions for a potential interview and I think Dr. Klimas would like to answer them….simply because it is such a tricky subject that can be easily misinterpreted…..it would be good to get answers coming straight from her.

  5. Sasha
    Jan 23 - 4:27 pm

    BTW, something’s up with the ‘donate’ button at the bottom of the article – it just goes to Paypal but not to anything specifically to do with you like the one in the sidebar does.

  6. Rebecca
    Jan 23 - 4:41 pm

    I wonder why Klimas and Sol decided not to mention severely ill patients. Do they think that the severely ill do not have ME? Or do they not care if people who cannot toilet themselves get even worse on forced swimming and yoga programs?

    As this video reminds us, the idea that severe patients can exercise on a bike, recumbent or not, is laughable.

    http://www.youtube.com/watch?v=VH-puNCQxh4

    Thank you, Jessica.

    • Cort Johnson
      Jan 23 - 5:00 pm

      I think this was more of a general overview….I do remember Connie Sol talking about exercises for the severely ill – not sure what they were but I think they started with stretching exercises with the arms…

      Deconditioning really adds quite a burden so if you can find ways to remedy or reduce that – it could be very helpful. I grant that we need some more specifics on this :)

      • Annie
        Jan 23 - 5:26 pm

        At my worse I couldn’t move my arms and even now one lift with a tin of beans (as i’ve seen Klimas recommend for people with severe m.e in a video on the CFS center website would trigger pem (I am predominantly bedbound). I do wonder how I would have faired trying her gentle and very specific approach when I initially became ill and had mild to moderate m.e for the first few years.

        She may have found something that works for a few but much remains unanswered (as it has been pointed out people can come down with m.e and Pots right at the start of their illness) and this needs to be approached with great caution.

        • Annie
          Jan 23 - 5:43 pm

          To add, three years ago I had recovered to where i was mainly housebound and could get out a couple of times a week for an hour or so in a wheelchair. At that time i could sit up for reasonable amounts of time.

          I then in a moment of madness did about a 200 to 250 metre walk. I immediately crashed from which three years on I have yet to recover and get back to the level i was pre short walk. As soon as I crashed i developed POTS symptoms which I have to this day. I cannot stand or sit up in a chair, can sit for a few minutes max on the floor, rest of the time I must be completely flat.

          So for me my POTS wasn’t brought on by deconditioning, but deconditioning may well be exacerbating/perpetuating it. I’d feel more comfortable if Klimas acknowledged that POTS symptoms can come on overnight in either people who went from healthy to M.E or moderate M.E with no POTS to severe. (as you said you get orthostatic symptoms if you overdo your activity). I think many – as you know – found her assertion that ‘deconditioing can account for much of the dysautonmia’ too broad, nor did it acknowledge or reflect many people’s experiences. I hope people have been able to raise this with Klimas.

  7. Paul Winter
    Jan 23 - 4:55 pm

    I have a few problems with the deconditioning theory of ME/CFS. Firstly most people who have ME/CFS went from being fit to being unable to function overnight. There was no time for deconditioning. A lot of people who have ME/CFS have never been been bed bound, I for one haven’t. The fact is I tried to carry on regardless and walked everyday when I first became ill because I believed in the philosophy of ‘use it or lose it’. The problem is, rather than get better I got worse. This is an experience I’m sure many can relate to.

    Then there are the remissions I have, perhaps a couple of times a year. These usually last a few days to a couple of weeks, although last summer I had one last for nearly 6 weeks. But it didn’t last. during my remissions I can walk for 2 or 3 miles a day without any ill affects. Plus my brainfog lifts and I actually think clearly. The only ill effects are a few muscle aches like would be expected from using muscles that haven’t been used for a while. But these muscle aches are mild. My question is how could these remissions happen if deconditioning is a major contribution to my illness?

    I find it interesting that none of the ME/CFS or CFS criteria mention remissions. Especially as remissions feature prominently in Ramsay’s definition of ME. It would seem that this aspect has been completely ignored by researchers since the creation of CFS. I think the fact that a lot of people who have ME have remissions is something researchers need to take into account, and for me makes the idea that deconditioning plays a major role, at least in ME, is problematic. My own feeling is that there are many different illnesses under the CFS banner. It is about time a complete separation of Ramsey defined ME is made from the whole CFS construct. I think that keeping them together under one banner is just confusing the issue.

    • Cort Johnson
      Jan 23 - 5:11 pm

      I think many people are in the same boat as you Paul…They got sick…struggled on trying to fulfill their obligations and then ultimately couldn’t. They were sick long before the spectre of deconditioning could raise its head. That doesn’t mean they’re not deconditioned now…but it makes it impossible for deconditioning to cause their illness..

      Yet something Dr. Klimas is doing is working -at least for some people (I know two of them)… I’m wondering if this very, very gentle approach somehow allows systems to switch on over time that more strenuous approaches keep bollixed up. (?) Or is there a subset of patients for whom deconditioning really is it….and if they get the proper exercise they will get much better?

      Its pretty mysterious at this point but with her gene expression tests Dr. Klimas should be able to disentangle some of this..hopefully she’ll be able to see what genes are flaring up or not flaring up in those patients who don’t improve that much and those that improve greatly…

      Hey, your remissions are fascinating. I’ve never experienced anything like that but I hear of other people experiencing similar patterns. Something extraordinary is going on…Do you have any idea what sparked them or stopped them once they got started?

      • Deborah Waroff
        Jan 24 - 12:42 am

        Cort, I’ve had remissions following therapeutic interventions that succeeded either in reducing pathogenic load or boosting NK activity. I’ve also had quite sudden turns from bad to very much worse, and I’m not sure how that fits the deconditioning theory.

        It is also difficult to understand how deconditioning and improvement via a program of “exercise” fit with the widespread low NK cytotoxicity scores characteristic of many with the disease. I would like you to ask Dr. K about that.

        Boosting cortisone via licorice can succeed in making me feel sprightlier but unfortunately it also results in high blood pressure. So much for that therapy. Funny, I was looking at your blog and I thought I was reading “Cortisone rising.”

        I would suggest that Dr. K. might call the therapy “movement therapy,” “motion activity,” “cardio enhancement,” or just about anything but “exercise.” This is America 2013 and “exercise” brings to mind things like spin class. It just can’t be helped — it’s in everyone’s linguistic framework.

      • Paul Winter
        Jan 24 - 4:21 am

        There doesn’t seem to be anything in particular that brings on a remission, although they do sometimes follow a period when I have kept my activity level down. They also tend to happen in late spring and late summer, so temperature may play a role. I forgot to say in my first post, usually I can only really manage to walk around the house to go to the bathroom, kitchen etc, without any deterioration in my health. So being able to walk 2 to 3 miles during a remission is significant. I have no doubt that I suffer some deconditioning, hence the muscle aches when I’ve been walking during a remission, but I don’t think that deconditioning is particularly significant to my over all health.

        All of the older accounts of M.E. (pre-CFS) talk about remissions. Dr Ramsay mentions the relapsing remitting course of the illness, although he also says that some patients don’t have remissions. None of the modern CFS or ME/CFS definitions talk about this aspect of the illness. I was very confused by these remissions at first and they made me wonder if i had M.E, especially as there is no mention of them in modern definitions. It was only when I read some of Ramsay’s work that I discovered that remissions are part of the clinical picture of M.E.

        • Cort Johnson
          Jan 24 - 5:14 am

          I think a significant number of people experience these from time to time which I find utterly fascinating….:)

          • Stephanie
            Feb 14 - 3:44 am

            Cort, I do know a few people who have had remissions but none of them as long as mine. My CFS/ME started with mono in 1987. One day I was well – doing physical work remodeling a house, and the next day bed bound. During this time I was only able to be out of bed for a few minutes a day. I tried several things from holistic Drs. but the thing that worked the best was B12 shots. Slowly I recovered, went to nursing school in 93 and by 95 was working full time as a nurse. During the remission years, I often worked up to 80 hrs a week, doing double shifts. This is not possible if you have CFS/ME. I assumed that I had recovered fully. Much to my surprise this was not to be. A combination of too many major moves, an elderly very difficult Mother and many other major stresses, I once again had a full blown case of CFS/ME. That was in 2005 and I am still struggling with this. There are periods of doing better and doing worse but still no recovery. The one thing I can point to as a factor in doing worse is Stress. Stress is my nemesis, so my focus now is learning how to avoid stress and when that is not possible – defuse it. I would love to be one of Klimas’s gene expressions study subjects.

            • Cort Johnson
              Feb 14 - 9:32 am

              Thanks Stephanie…an amazing story. It’s just incredible, really… I believe our messed up stress response system is the major culprit for me…I can feel it in my bones…We’re going to have alot of stuff on ways to reduce stress in the blog.

    • Sasha
      Jan 23 - 5:17 pm

      I’ve had similar experiences to yours, at different stages of my illness.

      I’m also confused now about the ‘use it or lose it’ issue. I just calculated my anaerobic threshold according to Dr Klimas’s equation and it’s 100 bpm. I used a pulse monitor a few years ago when I was looking into Staci Steven’s work and I think I was going over 100 bpm after walking about 50 yards.

      Does that mean I should do even less than I already do? Surely that’s going to leave me even more deconditioned than I already am. I’m already housebound except for very brief excursions from my flat. Should I start confining myself to the flat?

      That’s a serious question – if I thought it would help me get well, I’d do it.

      Is the idea that if you don’t keep triggering your ANS response your body will start to heal? Or something?

      • Cort Johnson
        Jan 23 - 5:26 pm

        My guess at this point is that – yes – if you can stop the ANS from ‘blowing up’ and then slowly rehabilitate it then you might get better…That’s my guess…I will find out more at the conference.

        Its pretty clear that doing ‘exercises’ while lying down is important.

        Taking frequent breaks is really important…

        Not overdoing it is very important.

        Being patient is very important…it takes months to see any results.

        Dan Moricoli had horrible problems with arms flying around and really rather complete breakdowns and he’s has been on this program for a couple of years. (They got his arms to start flopping by putting him on a treadmill :))

        I’ll talk to him when I get down there.

  8. Annie
    Jan 23 - 5:07 pm

    Have I understood it correctly from what you wrote above that a person without m.e would not find their ANS tanks during exercise, ie, this is a finding unique in people with m.e? Many thanks

    • Cort Johnson
      Jan 23 - 5:17 pm

      So far as we know that’s true…Something goes kablooey in the autonomic nervous system as people with ME/CFS start to exercise. Dr. Klimas is able to see this by taking blood as people with ME/CFS exercise and then by analysing it to see which genes have been switched on or off and comparing the results to healthy controls. The first genes to ‘go off’ are those involved with autonomic nervous system functioning…. those genes then appear to trigger several immune cascades that cause inflammation. (I often seem bloated after exercise…anyone else experience that?)….

      If this is true then if you can strengthen the autonomic nervous system then you might be able to shut off the immune cascade that causes so much distress. Dr. Newton is looking at drugs (which ones I have no idea) that might be able to help out with this.

      In fact, it appears that some of the genes healthy people use to help them exercise simply don’t get turned on in ME/CFS…Its not necessarily that the wrong genes get turned on..its more that there’s this system that just doesn’t get activated…

      We don’t any published papers on this yet, I don’t believe but a study is underway…ME/CFS patients have been compared to GWS patients but not other disorder so we can’t say its not happening in other disorders.

      • Annie
        Jan 23 - 5:47 pm

        Thank you for your helpful reply. Newton looking at drugs that may help ANS sounds promising..

  9. Simon McGrath
    Jan 23 - 5:38 pm

    Thought-provokimg piece, Cort, thanks.

    I think Nancy Klimas is doing some very interesting work – and I would love to see some published data on the effectiveness of her exercise regimes – but a lot of the theory sounds very unconvincing.

    For a start, most (but not all) studies on CFS patients find they are not any more deconditioned than healthy but sedentary controls. The bedbound patients you refer to below are inevitably deconditioned, but almost all research only looks at those able to make outpatient clinics – who don’t appear deconditioned.

    Secondly, those astronaut studies you mention found very little problem with fatigue either during long periods of bed rest or on reambulation.

    Finally, the published data on Graded Exercise programmes is overwhelmingly unimpressive. The large UK PACE trial found that GET made only a very small difference to walking ability of people after 12 months of exercise – leaving them still way behind their healthy peers.

    On the other hand, if the Klimas programme works, and they produce good published evidence for it, then I’d love to give it a go :)

    I hope to blog on this area in more detail in future, but meanwhile there is a lot of good information on the deconditioning thread at PR
    http://forums.phoenixrising.me/index.php?threads/is-there-any-evidence-that-deconditioning-alone-causes-pain-and-fatigue.15944/

    Cort wrote:
    “Deconditioning, Dr. Klimas asserted, is a significant problem in the ME/CFS community and if you’re unlucky enough to be deconditioned you’re going to suffer, and, she feels, probably needlessly.

    Strong words but it’s really no surprise that deconditioning would be prevalent in such a debilitated community; if you’re bedbound you’re deconditioned whether you have ME/CFS or cancer or a spinal injury or whatever, and the consequences are not good.”

    • Cort Johnson
      Jan 23 - 5:57 pm

      Yah, Simon – very interesting about the astronaut stuff..That indicates that something else unique to ME/CFS (and perhaps its allied disorders) is going on….Of course this is like all questions about this disorder…why don’t they recover from the flu? Why don’t they recover from being bedridden?

      Something else is obviously going on and hopefully the key is in those gene expression studies Dr. Klimas is doing that track gene activity in the blood as people with ME/CFS start exercising.

      There’s also the very important question of what Dr. Klimas means by ‘deconditioning'; is deconditioning only found in bedridden patients or does simply getting in better shape reap some dividends for some patients? Small improvements can loom large if you have ME/CFS….

  10. CJb2012
    Jan 23 - 5:38 pm

    Great article, Cort.

    I have a lot of the same questions and reservations as everyone else. Staying tuned.

    CJ

  11. Cort Johnson
    Jan 23 - 5:50 pm

    Dr. Teitelbaum posted this comment on his Facebook site

    ” Dr Klimas is correct that deconditioning and autonomic dysfunction are key issues, and that the problem is with physicians ignoring the other physical components–and pushing the exercise too hard.

    Reconditioning with the walking program we discuss (the “E” in SHINE) works well. For the autonomic dysfunction (which, along with sleep, hormones and temperature), an area controlled by the hypothalamus, pushing salt and water, giving adrenal support, and the medications Midodrine ,Dexedrine, and SSRIs can all help.

    Interestingly, many women feel better during pregnancy, where blood volume increases 30%, and new research (and our own experience) with HCG in fibro has been showing it to be very helpful for pain and overall symptoms in CFS/FMS. HCG is a hormone produced during pregnancy”

  12. Jessica
    Jan 23 - 5:56 pm

    Cort
    Great job with this new resource “Health Rising”. I think this exercise program sounds very interesting. It is a little challenging to stay within limits though and I think a little scary if you don’t have someone knowledgeable watching over your”exercise” routine….and yes, I too think it would be great if Dr. Klimas could define exercise so that the world at large doesn’t get “confused” and start thinking we can do things we simply cannot. I’m sure many people could just skim or read headlines and make some very false and damaging assumptions. That said though, I could see where deconditioning can’t be good and have noticed gentle yoga stretches and very short walks can help, its just hard to gage it all accurately. I guess I’ll try getting the heart monitor, but do wish we individuals had some expert like Klimas to oversee it, its hard to navigate. Thanks for the atricle,looks interesting for sure.

  13. Tuha
    Jan 23 - 6:08 pm

    I have also a lot of questions about this. I was working with ME for 8 years but then i was so exhausted that i crashed and during 2 years I was only able to walk twice a day for 10 minutes and maybe to work for 1 hour with my computer – the other hours I was only in bed. My theory was also that I will relax and then i will try to walk slowly more and more. You would say that if you walk regullary then after some time you can walk more without any problem. But always when I tried it I got PEM and didnt feel good. since then I am in constant recovery periode and that´s why I can do more and more but I think it´s not because of more exercising.

    You know it works like – the last day I was able to walk 40 minutes and then the next day I wake up I feel better and I can simply walk for 1 hour. Before I was walking 3 months 40 minutes and I coudnt walk 1 hour without problems. Why I coudnt walk 1 hour without problems for example after 2 months of 40 minutes walking. So my theory is that you can exercise more not because you are exercising regullary more and more but simply because for a reason your health improved. This can be maybe a bit different if you were in bed for years without doing anything. then small exercise can help you but here I also think that you can start to exercise slowly only if your health improved and if you are able to do it.

    Also I would have 1 question. I dont know if I use the right therm but what about lactic acid. I always feel lactic acid if I walk – it´s not so strong but I feel it next day ( I walk every day so I feel it daily) . if you dont walk for weaks and then you walk for example 40 minutes then it´s normal that it happens but why it happens if I walk every day 40 minutes?

    And the last question. I can walk 40 minutes but I wanted to try a bit stacionary bicycle and after the easiest level I felt dizzy after 6-7 minutes and I got PEM later.

    Also with walking. I can now walk 1 hour without problem. I feel that I would have condition to do another one but simply after 1 hour something starts to be activating in my body and I start to feel dizzy, I have kind of heart weakness and so on and So I dont continue but not because that I coudnt do more physically ( I have still condition to continue) but I feel simply bad.

    A lot of questions

  14. Deborah
    Jan 23 - 6:11 pm

    Not buying into any part of this. And I better stop there else I risk being rude.

  15. Brian
    Jan 23 - 6:46 pm

    I respectfully disagree. I couldn’t have exercised if my life depended on it until treatment. I was vomitting and not able to walk with weakness in my arms and legs. There is absolutely no way that patients with Severe ME can or should exercise. In fact my grandmother who was a doctor recommended no exercise due to the infection going deeper into my tissues. This plays right into the CDC’s baloney. Sorry this fish isn’t biting.

  16. Annie
    Jan 23 - 7:35 pm

    Brian, may I ask what was your treatment. Understand if you would rather not discuss on a public forum, so feel free not to answer.

  17. Bonnie Tucker
    Jan 23 - 7:54 pm

    I have been doing this program since Oct when I heard about it. I have gone from bed rest to pottering around my house, not a lot 300 yards a week is all I can manage.

    The key is to not get hung up on the word “exercise”, this is not “exercise” it is “movement”, it is slow passive movement that does not elevate anything. If your heart rate is one beat more than when your in a resting position you are doing it wrong. I am by no means well, but I am 100% better than I was, I don’t believe the button is turned off either, I believe what we are doing is learning how to adapt so that we can get around our bodies shut down position. We are reprogramming our minds to think about movement in a passive not active way. This is an adaption treatment not a genetic one. I can walk on the flat but you add a gradient, or a step and my body can’t cope with that level of resistance at all, it simply requires more energy than I have in me to achieve, but I can now see a time when that will happen, if I can convince my body that steps do not need “extra energy” just the amount I already have re-channelled in a passive manner, I win.

    Don’t tell an ME person about exercise too many have died from that word, but passive, anti-gravity movement, is “just what the suffer’s ordered” because if you do it slowly enough you will see a difference,
    this is no cure but in 4 months I have seen a difference enough to know that it is worth trying for a bit longer.

    ME might be for life, but so is adaption. This is an adaption technique.

    Bon

    • Theresa Schroeder
      May 02 - 1:36 am

      Bon,

      I really find what you write interesting–the concept that we are convincing our body to re-channel the energy the energy it already has, not produce more energy. I don’t quite understand it, but “feel” it makes sense!

      I have just found this article and postings (it’s not May 2, 2013) so I haven’t read up on the “exercises” or watched the video. I don’t know what has followed since Jan. 23. It’s hard for me to keep up with the blog, but love Health Rising.

      I have had two or three brief remissions over the years. But mostly I find that the illness cycles up and down, back and forth. By that I mean I get somewhat better and think I’m improving, then no matter what I do or don’t do, get worse again. Of course, much exercise usually causes crashes. But one 24 hr. period of complete absence of pain/fatigue followed an incredibly strenuous day’s work. I wondered if that had somehow “re-set” my system..I’ve never been able to do that much work since, so I don’t know.

      Anyway, if anyone else can explain this passive movement so that we can do it without being monitored, please point me the way. I am not bedbound but almost housebound and find I can do less and less. I had been wondering if it’s the result of de-conditioning after so many years, but now I doubt that, altho of course I’m de-conditioned.

      (Forgive meandering. I am always in some state of brain fog from light mist to dense pea soupers..:>)

      Thanks, Cort, and everyone who posts.

  18. Jonathan Lee Wright
    Jan 23 - 7:57 pm

    See any symptoms or reactions from doctors that look familiar here? Is the reference to overcoming fatigue symptoms germane to this thread? The following text is from FDRC founding member Jonathan Lee Wright’s testimony in a speech given before the US House of Representatives during a staff press briefing supporting Mycotic Disease Awareness Week, September 21, 2004. Rayburn Bldg, Washington, DC. Wright spent over 300 nights camping outdoors in 2004, in an attempt to recover from mold poisoning in a Salida, Colorado apartment years before.

    I AM HERE TODAY TO ASK FOR YOUR HELP. WE NEED TO RAISE AWARENESS IN THE MEDICAL PROFESSION AND IN OUR GOVERNMENT ABOUT “TOXIC MOLD”. I AM AN AFFECTED PERSON. THIS IS MY EXPERIENCE.

    IN JUNE OF 2000, I MADE THE LARGEST SINGLE MISTAKE OF MY LIFE. I RENTED A BASEMENT APARTMENT IN A HOUSE THAT WAS APPARENTLY FULL OF PATHOGENIC MOLDS. THE EFFECTS OF EXPOSURE TO THIS HAS CHANGED EVERY ASPECT OF MY
    LIFE.

    SINCE MY EXPOSURE, I HAVE ENDURED 4 YEARS OF INTENSE SUFFERING AND DEBILITATING HEALTH PROBLEMS. I’VE HAD CRIPPLING ARTHRITIS IN MY EXTREMITIES, CONSTANT DIAHRREA, MIGRAINE HEADACHES, CHEST PAIN WITH
    HEART ARRYTHMIAS, LIVER PAIN WITH DARK URINE, BLURRED VISION, MENTAL IMPAIRMENT THAT MAKES EVEN READING DIFFICULT, CRUSHING FATIGUE, NERVOUS SYSTEM EFFECTS, NUMBNESS AND TREMORS IN MY EXTREMITIES, HIVES, BRUISING AND RASHES.

    THIS IS NOT AN ALLERGY.

    I HAVE CONTACTED SEVERAL DOCTORS. DESPITE MY CONCERN THAT MY SYMPTOMS WERE CAUSED BY MY EXPOSURE TO TOXIC MOLD, I WAS TOLD THERE WAS NO BASIS FOR THIS ASSUMPTION WHATSOEVER.

    I HAVE SINCE HAD BLOOD TESTING DONE BY SPECIALISTS THAT SHOW AM WILDLY REACTIVE TO THE TOXINS FROM CERTAIN MOLDS. HOWEVER, THESE TESTS ARE ACCEPTED BY ONLY A MINORITY OF TRADITIONAL DOCTORS.

    I HAVE BEEN ABLE TO AVOID CONTINUED PROBLEMS WITH INDOOR MOLDS BY TAKING THE EXTREME STEP OF ABANDONING MY HOME, AND LIVING OUTDOORS ALMOST
    FULLTIME FOR THE LAST TEN MONTHS, CAMPING THOUGH A WINTER IN NORTH AMERICA.

    I AM LUCKY, BECAUSE I HAVE RECENTLY GOTTEN ALMOST COMPLETE REMISSION OF SYMPTOMS THROUGH THIS “EXTREME MOLD AVOIDANCE” LIFESTYLE. WHEN I’M HEALTHY AND IN A NON-REACTIVE STATE I CAN ENGAGE IN VIGOROUS ACITIVITIES
    LIKE MOUNTAIN BIKING AND ROCK CLIMBING. BUT WHEN I’M AFFECTED BY EXPOSURE TO MOLDS, I HAVE DIFFICULTY WALKING WITHOUT PAIN.

    I’M NOW SO SENSITIVE TO INHALING MINUTE QUANTITIES OF INDOOR MOLDS THAT I CANNOT TOLERATE BEING IN MANY, IF NOT MOST, BUILDINGS AND RESIDENCES
    IN COLORADO. THIS HAS HAD A HUGE IMPACT ON MY LIFE, AND HAS CAUSED THE SLOW DECONSTRUCTION OF MY HEALTH, WORK, RELATIONSHIPS, AND FINANCES.

    PRIOR TO MY DISORDER, I WAS A WELL-PUBLISHED PROFESSIONAL PHOTOGRAPHER, WITH A SPECIALTY OF ADVENTURE SPORTS. I FELT FULFILLED IN MY CONTRIBUTION TO THE PROMOTION OF HEALTHY LIFESTYLE THOUGH MY IMAGES.

    HOWEVER, SINCE MY OVEREXPOSURE TO MOLDS, I AM NOW FACED WITH THE REALITY OF LOSING MY HOME, POSSESSIONS, AND EVEN MY STATE OF RESIDENCE, BECAUSE I AM CONSIDERING MOVING TO ANOTHER REGION TO TRY AND OUTRUN THIS.

    I HAD TO LEARN EVERYTHING I COULD ABOUT MOLD IN ORDER TO SURVIVE. IN DOING SO, I HAVE FOUND MANY OTHER PEOPLE WHO HAVE ARE EXPERIENCING PROBLEMS LIKE I HAVE AFTER BEING EXPOSED TO MOLDS.

    MANY OF THESE ARE CHILDREN AND THE ELDERLY. THEY CANNOT LEAVE THEIR HOMES AND GO LIVE OUTDOORS LIKE I DID TO GET BETTER. AND THEIR DOCTORS DON’T EVEN KNOW WHAT’S WRONG WITH THEM. BY AND LARGE, THE MEDICAL
    COMMUNITY SEEMS TO BE UNABLE OR UNWILLING TO ACKNOWLEDGE THIS DISORDER.

    I CONVEYED THE CONTENT OF THIS MESSAGE TODAY TO EVERY RELEVANT OFFICE AND AGENCY IN MY STATE. DESPITE WHAT I CONSIDER TO BE A PRETTY ALARMING MESSAGE IN LETTERS AND CALLS TO CITY PLANNING OFFICES, COUNTY HEALTH AND
    ZONING DEPARTMENTS, THE STATE BOARD OF HEALTH, BOTH OF MY STATE SENATORS, MY STATE ATTORNEY GENERAL, AND MY GOVERNOR — ALL HAVE EITHER REFERRED ME ELSEWHERE, OR HAVE IGNORED MY CRIES FOR HELP ENTIRELY.

    MY EXPERIENCE TELLS ME TOXIC MOLD IS A PUBLIC HEALTH THREAT THAT MUST BE ACKNOWLEDGED AND ADDRESSED BY THE STRONGEST POSSIBLE MEASURES. HOWEVER,
    THERE IS EVIDENCE THAT THERE IS PARTISAN EFFORT BEING MADE TO DISCREDIT THOSE SICK WITH THIS DISEASE, AND TO DISMISS THE EXISTENCE OF THE ISSUE ALTOGETHER. IF ALLOWED TO CONTINUE, I FEAR DISEASE FOR THE PUBLIC AT
    LARGE.

    MY EXPOSURE TO TOXIC MOLD AND MY CONTINUED SENSITIVITY HAS CHANGED MY LIFE, AND NOT FOR THE BETTER. SO I HAVE TRAVELLED ACROSS THE COUNTRY TO ASK FOR YOUR HELP.

    WE MUST CHANGE OUR GOVERNMENT’S AWARENESS AND RESPONSIVENESS TO THIS NATIONAL HEALTH EMERGENCY. WE MUST DO EVERYTHING WE CAN TO HELP THOSE WHO ARE AFFECTED AND PREVENT OTHERS FROM BEING EXPOSED, BECAUSE THE NEXT PERSON WHOSE LIFE IS RUINED COULD BE YOU, OR SOMEONE YOU LOVE.

  19. kim
    Jan 23 - 8:46 pm

    Cort

    Did you write that you will be in town for the conference
    i am registered to be at the conference at Nova on Saturday, and it would be such an honor to meet you. This topic is dear to my heart, as a PT (physical therapist) and also patient ill since mono in 89, who was never able to exercise as i would have loved, and now struggling to rehab myself back to whatever level is possible, from collapse in 2010.
    (You know me from Phoenix Rising, by the way.
    I sent you a message on Faceook. please let me know if tere is anything we can do to be of assistance while you are in town.

    • Cort Johnson
      Jan 24 - 5:02 am

      Thanks! I look forward to seeing you there.

  20. John
    Jan 24 - 2:34 am

    I don’t buy exercise doing anything whatsoever for ME/CFS that it wouldn’t do for patients suffering from any other disease, which means it has absolutely nothing to do with improving the underlying disease process. I had a gradual onset with a progressive disease course and I have never in my life been bedbound, although I am gradually inching closer to being so as I get worse over time. In fact exercise was one of the first, second and third things I tried to make me feel better and it only made me worse. I used to lift weights in junior high and high school so I figured that I just needed to get back to that so I did. I started working out for 20 min. a day three times a week, then could only do two times a week and then worsened to the point of only being able to exercise once a week. Then it just became too much to do at all. I would also try and go for walks and over time I gradually became less and less able to walk whatever route I was walking so I had to progressively shorten the route, again to the point of not being able to walk any distance at all without experiencing severe PEM. This completely disagrees with any ‘deconditioning’ paradigm for ME/CFS, either as a genesis or maintaining factor of the disease, and as others have pointed out either a person became ill overnight so there was no time to become deconditioned or they had a gradual onset like me and never were bedbound to begin with.

    In my opinion whatever is wrong with me is immunological. I remember catching some sort of cold which was characterized by a dry, hacking cough which hung around for a couple of weeks and the whole time I was sick my constant headache went away and my head felt so good it felt like I was on opiates. Then as I got ‘better’ from the illness my headache came back just like it always is. This says to me that some part of my immune system was either activated or shut off by that particular bug and that that part of my immune system plays a part in whatever is keeping me ill.

    • Cort Johnson
      Jan 24 - 5:23 am

      To be precise I want to point out that Dr. Klimas did not say that deconditioning causes all the dysautonomia (autonomic nervous system problems) in ME/CFS. She said it was significant contributor to that but there’s plenty of room for autonomic nervous system problems to show up for other reasons.

      Look at Liz’s experience with POTS and Dr. Levine’s protocol. Mast cell activation syndrome and Ehlors Danlos Syndrome ended up contributing to her POTS but she still found value in Levine’s protocol. As with everything with ME/CS some people will probably benefit significantly from Dr. Klimas protocols and some will not…

      This is not an either/or deconditioning/not deconditioning dichotomy. Let’s say other issues causes 40% of the ANS dysfunction in ME/CFS. I would expect that’s more than enough to limit one significantly physically.

      I’m not deconditioned either but I strongly suspect, in fact, am really very sure that ANS problems are key for me.

  21. Sasha
    Jan 24 - 4:22 am

    I’ve been thinking about this overnight (thank you, insomnia!) and have realised how interesting this bit is:

    “Dr. Klimas noted that time sensitive gene expression studies have revealed the fascinating and possibly absolutely pivotal finding that during exercise the autonomic nervous system tanks first in ME/CFS and then it takes down the immune system. That ANS ‘tank point’ occurs when the body changes over from aerobic to anerobic metabolism […]”

    I think we’ve been so busy talking about the pros and cons of the ‘exercise’ programme and whether deconditioning could have caused our OI that we haven’t noticed this striking finding. Regardless of the other issues, the discovery that when PWME go anaerobic our ANS tanks and then our immune system does is a major finding.

    Any idea what it is about the anaerobic threshold that could have these effects?

    Does it suggest drug therapies?

    • Cort Johnson
      Jan 24 - 5:01 am

      I agree. This is absolutely fascinating and very promising. If Dr. Klimas can consistently find the same genes show up then they may ultimately provide targets for drug therapy. Of course they’re also possibly biomarkers as well. I don’t know what genes have shown up – we may have to wait for the paper.

      Dr. Klimas and Dr. Fletcher have found connections between the ANS and the immune system before in ME/CFS although the actual compound at the moment escapes me.

      • Annie
        Jan 24 - 11:43 am

        Also I hope they are looking at why people with m.e reach their anerobic threshold much quicker than healthy people

        • Annie
          Jan 24 - 12:24 pm

          Cort, I am right that people with m.e/cfs reach their anerobic threshold much quicker than healthy people? Thanks

  22. Cort Johnson
    Jan 24 - 5:06 am

    Here’s a comment from Jayne on Facebook

    “This is the research that started me on the path to walking again.”

    Cort Johnson “Did you work with Dr. Klimas, I wonder?”

    “No. I live a long ways away, in Western Canada. I just avidly follow the research, watched and read everything I could find, and got religious about using my heart monitor. I’ve gone from wheelchair/bed-bound to driving myself, doing my own shopping and walking short distances (slowly). There’s a strong elevation effect, though – my resting heart rate averages 10 beats a minute higher at home (halfway up a mountain) than it does at sea level, so I had to leave home to have enough spare room in my HR to do anything at all towards reconditioning.”

  23. Enid
    Jan 24 - 5:58 am

    Whilst I can see the principle I’m not too sure what to make of this Cort, but then different for each ? – a severe relapse followed some gentle osteopathic treatment and extending small walks as advised. Have to be a fence sitter on this advice for the moment.

  24. Paul Winter
    Jan 24 - 8:06 am

    The testing that’s carried out by Dr Klimas and Connie Sol doesn’t seem to be the same as that carried out by Staci Stevens at pacific labs http://www.research1st.com/2011/11/18/pfl-testing/ From the Videos of Connie Sol carrying out an assessment ( http://vimeo.com/26783830 http://vimeo.com/27073084 http://vimeo.com/27191660 ) it would seem that the whole thing is done in one session whereas Staci Stevens does the test over 2 days and takes the second reading to get the patient’s anaerobic threshold. In other words she uses the threshold measurement taken when PEM has set in. Surely this is a big difference.

    Also on the videos by Klimas and Col Dr Klimas say about the importance of getting accurate readings from VO2Max, and being tested somewhere such as a university where the quality of the equipment is good. She says that a difference of just 10% could be critical for the patient’s outcome. But now Connie Sol is saying calculating that using the 220 – your age x .60 ((220 – age) x.6 ) formula is good enough. If this is so this is quite a change from what Dr Klimas says in the videos about the need for accurate testing.

    • Sasha
      Jan 24 - 3:58 pm

      That’s interesting about the difference between Staci Stevens’s method and Dr Klimas’s. I wonder if the reason for using the non-PEM’ed anaerobic threshold is that you should be using that threshold to avoid PEM and if you never go over it, you needn’t worry about what your threshold would be during PEM. A good question to ask.

      On the videos, Connie is saying that if you can’t get VO2 max testing (99.9% of us) then you can approximate it by using that formula. She actually says x.65, not .60, which is a discrepancy in the videos. Maybe that calculation gives a conservative estimate. Maybe not! Another good question.

      The vast majority of us won’t have access to VO2 max testing or a doctor who will know how to work with us on this, so we’re on our own. I think the videos are a good start but that we need much more information than is in them and a chance to ask questions and get responses.

      Patients are inevitably going to try this for themselves and there’s enough information out there to feel that you could give it a crack but enough fuzziness in the info for you to get it quite badly wrong. I think there’s a need for good, written info that has been trialled by patients for comprehensibility.

      • Amy
        Jan 25 - 3:36 pm

        It is my understanding that the anaerobic threshold (AT) itself is consistent day to day, regardless of whether or not one is in a state of post-exertional malaise (PEM). Instead it is the rate of speed with which one reaches their AT that is faster when experiencing PEM. (I’ll use the acronyms from here–they help me since I can’t type well.)

        I completed the testing with Staci Stevens at Pacific Fatigue Lab last fall. The discrepancies between all of the measurements taken on day one and day two do provide quantifiable evidence of PEM, but it’s the change in VO2 max (the body’s ability to utilize oxygen) that indicates PEM.

        To give you my own example, my AT was 119 BPM on day one and 120 BPM on day 2 of testing, so almost identical. However, on the second day, I was already at my AT just holding myself up on the bike without pedaling (or truly even just walking in the door of the lab), whereas it had taken me pedaling to 2 watts on the first day to reach it. My VO2 had also changed by 18 percent on day 2.

        I have seen this time and again with myself if I exceed what I know to be around my acceptable level of activity. I’ll reach my AT just by standing up the next day (or the next few days), whereas I could be standing for 5 to 10 minutes before reaching my AT the day prior. Some days, I can climb the stairs in my house without hitting my AT long enough to set off my heart rate monitor’s alarm, and some days I can’t (I think it takes about 5 sustained seconds of being over my limit before the alarm sounds–it almost always gets to 120 but sometimes at the top of the stairs so I sit right away, and the alarm doesn’t sound). This variability is why I think it’s very important for me to use my heart rate monitor–things I think I can do before hitting my AT are not always consistent day to day.

        Another key difference during the testing was my resting heart rate. If I’m not mistaken, resting heart rate increases when one is in a state of PEM. In fact, Ms. Stevens told me my resting heart rate first thing in the morning (before rising) should clue me in to whether I had overdone my activity recently. If I always take my resting heart rate and have a good idea of what it is on average, she said a resting heart rate about 10 BPM higher than my normal number indicates prior overexertion. (Just to give you my numbers, my resting heart rate had increased by 7 BPM on day 2 of testing.) Usually, I’m symptomatic in other ways that let me know I’ve overdone it, but the resting heart rate is just another reinforcing piece of information to go easier on myself, and I’m more likely to adhere to something when the quantitative data tells me to.

        Long, long story short, I just wanted you to know that if you want to use a heart monitor to pace yourself and are calculating your AT without lab testing, I think you’re safe to assume your AT (the beats per minute measurement itself) is the same every day. It takes quite a lot of physical training to change that.

        I’m sorry I don’t have links to provide to verify this information.

        • Amy
          Jan 26 - 11:24 pm

          I apologize, as I think I provided erroneous information above regarding the AT.

          Though anecdotal (like using my own results), I came across another individual’s two-day maximum capacity exercise testing measurements, and their AT did decrease on the second day. This could potentially cause problems for individuals without access to the two-day testing who are trying to determine their AT via the formula (220-age x .6).

          I shouldn’t have posted since I wasn’t certain of the information.

  25. Judith M.L. Day
    Jan 24 - 8:24 am

    At my worst, when I was not bed bound, I could not raise my hands above my head long enough to comb my hair or use my arms long enough to dust my dining room table. When I woke up my ears were ringing and it took me quite a while to get vertigal, while my blood pressure dropped. This was in 1998. Now in 2013, pushing myself doing graded exercises every day, from only minutes at a time, which have increased considerably, I, by not ever going beyond my limitations, I am living a fairly normal life. I spend at least 12 hours a day in bed and exercise at least an hour each day. One thing I find works for me is do 10 repititions at say 2 pounds, then another 10 at 1 pound and then another 10 at 1/2 pound. I have to reduce the weight to do three repititions in a row. I know my body well, enough now to quit whatever I am doing before I crash. I still get out of breath easily, but stop whatever I am doing until it gets back to normal for me. Adequate rest, healthy eating, maintaining normal weight, and not overtiring myself works for me. This is my life and I want to enjoy it the best way I can. I have written my experience in a book named Judging Judi

  26. Marieke
    Jan 24 - 11:02 am

    Thanks Cort for this information. POTS is not caused by deconditionering. POTS is a heterogeen disease. For instants it can be auto immuun, dammaged nerves etc… How ca you explain this therorie by POTS patients who became ill fron one day to the other with symtoms as tachycardie while tey were in goor schape and aktive. This theorie of klimas is only valid for a small group.

    • Cort Johnson
      Jan 24 - 3:08 pm

      Agreed Marieke that POTS can be caused by quite a few things; I was surprised in fact by how many different things can cause it. You can throw Mast Cell Activation Syndrome in there as well.

  27. Marco
    Jan 24 - 11:24 am

    Cort thank you for this information but decondiotionering doesn’t explain the symptoms by patiënts with a suddenonset of POTS etc… This theory of Nancy does not fit for most patiënts i know. It sounds more as a deficit in the parasympahtic nervsystem or genetic. This system interfers with the immuunsystem. But i think that Nancy is on track of were the problems come from but the cause is somthing else. If anybody knows let us know…..

  28. Marty
    Jan 24 - 1:06 pm

    Deborah says, “I would suggest that Dr. K. might call the therapy “movement therapy,” “motion activity,” “cardio enhancement,” or just about anything but “exercise.” So very true. Dr. Klimas has done immeasurable harm with her favorite term, “chronic fatigue”, and now she adds the word “exercise”, and in the context of CDC! One wonders how she could be so insensitive to not only the physical damage she does but the political damage as well. If she does a seminar on Saturday about “exercise”, she is doomed to be misunderstood by a vast number of people and will feed the GET theory among well-meaning doctors who looked to her as a M.E. expert. To say nothing of this M.E. expert promoting “exercise” to a world that thinks we are just lazy. I think we should rise up and loudly correct her every time she uses these two words. I know she has been told many times, and she just doesn’t seem to hear herself. But you can bet your doctor hears that you are just fatigued and that your own expert says you should exercise.

    • Deborah
      Jan 24 - 5:45 pm

      Ok, just to set the record straight there are TWO Deborah’s posting here , and I was NOT the ‘Deborah’ Marty referenced in his post of January 24, 2013 at 1:06 pm

      That ‘Deborah’ is Deborah Waroff , posting @ January 24, 2013 at 12:42 am

      No worries. I will now begin to post here as Deborah Ann, so that readers might differentiate.

  29. Humphrey
    Jan 24 - 1:52 pm

    Cort or anybody else,
    I have a question about the quote below: is this brand new, unpublished work? If so, is it part of Dr Klimas’s research program?

    “Dr. Klimas noted that time sensitive gene expression studies have revealed the fascinating and possibly absolutely pivotal finding that during exercise the autonomic nervous system tanks first in ME/CFS and then it takes down the immune system. That ANS ‘tank point’ occurs when the body changes over from aerobic to anerobic metabolism, a switch that occurs all too early for many people with ME/CFS.”

    • Cort Johnson
      Jan 24 - 3:06 pm

      To my knowledge it is…I haven’t seen this before. Dr. Klimas has a grant to explore gene expression patterns before, during and after exercise in much greater detail than has been done before. I think, for instance, that she’s looking several days after the exercise challenge. This follows on work that she did before; she apparently had enough good preliminary data to get the NIH to agree to the grant.

    • Marieke
      Jan 24 - 4:22 pm

      I think the ‘tank point’ of ANS can also be a compensation mechanisme for lack of energy produced by the mitochondria. Turn of the genes like Klimas propose will be verry dangeres.

  30. JM
    Jan 24 - 4:26 pm

    This is so irresponsible and dangerous and way off base with those who are deeply ill. Doing exercise, even so-called minimal exercise, can cause permanent damage, which is my case. I am housebound/bedbound because of so-called minimal exercise.

    While deconditioning definitely can make things worse, trying to reverse it is even more damaging.

    Just can’t believe Klimas would publish in support of Simon Wessley’s so-called work.

    Appalling.

    • Cort Johnson
      Jan 25 - 9:48 am

      I disagree JM Dr. Klimas is not proposing doing anything like GET. This is very, very slow and gentle ‘exercise’ that has nothing to do with the “I’m to walk X amount this week and this amount next week….It requires that you do nothing that makes you worse and nothing, in fact, that you even notice. It also requires that you use a heart monitor to keep your heart rate low. It also states that you should do your ‘exercise’ in a recumbent position. I don’t see Wessely or White proposing those things.

      I just got back from talking from Dan Moricoli who literally spent 45 days in a chair, crawling his way to the bathroom when needed. Most of his time he felt was spent in a semi-comatose state in which all that he was aware of was blackness…As he moved a bit out of that he tried some walking – maybe be a 100 yards which landed him back in bed for 3 weeks.

      Dr. Klimas exercise program and extreme rest – going to bed in a dark room at the first sign of a relapse – which was accompanied by flailing arms (which sometimes whacked him in the face) – was the key factor, feels in getting better. He’s not healthy but two years later he’s now able to work regularly and walk up to a mile at a time. I don’t know how or why that’s working for him but for some reason this very, very slow exercise program is somehow managing to knit him together again. Will he return to full health? He has a long, long way to go before he can jump on a bicycle again but he’s very grateful for the progress he’s made.

      • JM
        Jan 25 - 1:31 pm

        Cort, I did not mean she agrees with all of Wessley’s ideas. However, there are many of us who are now bedbound by trying simple excercize. PEM is uavoidable even with very, very minor exercise. There is some mechanism that prevents the phenomenon of getting stronger by gradually increasing exercise in some of us. It’s like telling someone with sunburn to gradually inceease sun exposure.

        Anyway, there are some PWC’s that can do such things, but those of us who cannot don’t seem to be represented in this study, and those of us bedbound now have to worry about headlines such as these, getting to doctors, who may use this to push the gradual increase in physical exertions.

        Thanks.

  31. Deborah Ann
    Jan 24 - 5:47 pm

    Ok, just to set the record straight there are TWO Deborah’s posting here , and I was NOT the ‘Deborah’ Marty referenced in his post of January 24, 2013 at 1:06 pm

    That ‘Deborah’ is Deborah Waroff , posting @ January 24, 2013 at 12:42 am

    No worries. I will now begin to post here as Deborah Ann, so that readers might differentiate

  32. Deborah
    Jan 24 - 5:49 pm

    Ok, just to set the record straight there are TWO Deborah’s posting here , and I was NOT the ‘Deborah’ Marty referenced in his post of January 24, 2013 at 1:06 pm

    That ‘Deborah’ is Deborah Waroff , posting @ January 24, 2013 at 12:42 am

    I use my first name, ‘Deborah’, only in my posts.

  33. Liz Ho
    Jan 24 - 7:27 pm

    Having ME/CFS for 30 years and having tried to keep up with exercise including, 10 months of GET which ultimately made me worse, I suggest Pilates with a qualified instructor using the reformer and the Cadillac/trap table is an excellent form of exercise for the mild to moderate sufferers. The Pilates principals can also be used for the severe. I find, now I’m at a low 35% operational, thermal water gentle stretching using yoga principals and floatation devices and flippers also a successful way of avoiding PEM. Again it it all about the pacing/anaerobic threshold. Both exercise/body movement forms can be done horizontally. Over the 30 years I have enjoyed and then crashed from many types of exercise and sports. These two work for me. I suggest Dr Klimas’ team investigates Pilates.

    • Cort Johnson
      Jan 25 - 9:50 am

      Thannks for the suggestion Liz. I believe they have suggested Pilates because of its ability to strengthen the core abdominal areas where blood tends to pool in people with ME/CFS. It’s something I’m interested in as well but don’t know anything about. I’ll ask Connie Sol about this at the meeting…

  34. Caroline
    Jan 25 - 6:50 am

    I really don’t know what to think about this idea of deconditioning. It makes me wonder if everybody diagnosed with CFS or ME has the same illness.

    I had a very sudden start of my illness almost four years ago, with no problems before and I was in a good shape before the onset. All the symptoms were the most extreme the first months and year and gotten better after that. In the beginning I could literally not do anything (mentally of physically or being exposed to stimuli like sounds etc) without collapsing and I could hardly stand.
    The ‘post exertional malaise’ and POTS were much more extreme in the beginning than now.

    Also I have not heard before about the fact that POTS and low blood volume are associated with deconditioning?

    It makes me a bit sad to read this, becaus it again feels for me a little like the illness is not being taken seriously.
    I’m being sceptical at the moment.
    But if it works for some that is good news of course.

    Thanks for keeping up this website with good information!

    Caroline
    from The Netherlands

    • Cort Johnson
      Jan 25 - 10:02 am

      Thanks Caroline…I wonder if we can stretch the term ‘deconditioining’ to include an aerobic system that has somehow turned itself off even in those who are not classically ‘deconditioned’? As I noted I’m certainly not deconditioned but I certainly am exercise limited…Dr. Klimas’ studies suggest that various components of energy production do not come on in people with chronic fatigue syndrome when they exercise.

      Some people see to be able to get that system turned on again or they’ve managed to enlarge it on other ways. Dan Moricoli, for instance, has not increased the maximum heart rate at which he exercises (about 90 beats per minute) but he’s greatly increased the amount of exercise he can do before he hits that 90 bpm threshold that sends him into anerobic metabolism and kicks off the immune cascade that appears to cause PEM. Where he was unable to walk or work much at all before not he can walk regularly…

      It’s almost as if his body is constructing new aerobic pathways at the low end of the scale….its adapting itself to a new aerobic environment; its not as strong as before but its functioning. The body does this – create new means of getting the job done – which are not as efficient but still work – all the time when its injured.

      It may be that Dan, by being careful and doing short bursts of ‘exercise’ (that do not raise his heart rate), with frequent rest breaks, mostly lying down and never pushing himself – has kind of re-engineered his system.

      He is obviously one of the people who have not returned to their athletic pursuits; his aerobic capacity is still very limited but he’s much stronger…and he was really a basket case before :)

  35. Anne
    Jan 25 - 7:43 am

    Quoting Paul Winter:
    “The testing that’s carried out by Dr Klimas and Connie Sol doesn’t seem to be the same as that carried out by Staci Stevens at pacific labs http://www.research1st.com/2011/11/18/pfl-testing/

    There was a great blog post on this at Jennifer Spotila’s blog Occupy CFS, see:
    Comparing Exercise Advice
    http://www.occupycfs.com/2013/01/18/comparing-exercise-advice/

  36. Sasha
    Jan 25 - 7:45 am

    The following was just posted on Phoenix Rising and is on several places in the net – I’m assuming it must come from a press release from Dr Klimas.

    Note what she says about exercise therapy not getting to the heart of what causes ME in the fourth para (beginning, ‘I have been caring for patients for 26 years…’).

    ********

    “Ampligen, the first drug ever seeking approval to treat chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), recently hit another roadblock with the U.S. Food and Drug Administration (FDA).

    In its long quest to treat 1 million Americans suffering from this debilitating illness, the FDA advisory panel did not recommend the drug to be sold on the market, largely because CFS/ME doesn’t have clear biomarkers such as blood tests to define patients who most likely to respond to the drug. Data from clinical trials of Ampligen has not convinced the FDA so far.

    The real loser is not Ampligen, but CFS/ME patients whose daily suffering continues to be unabated. CFS/ME feels like you’ve been run over by a truck – pain, inflammation, utter exhaustion and trouble concentrating.

    I have been caring for patients with CFS/ME for 26 years now. It’s heartbreaking seeing them struggle and suffer from this serious illness that has been trivialized by science and society. One of the early controversies quickly disproven suggested that CFS/ME is a form of depression. This led to enduring public policies that allowed insurance companies to limit coverage to CFS/ME to either mental health or exercise therapy, neither get to the root cause of CFS/ME.

    CFS/ME researchers, including myself, have seen major advances in our understanding of the biology of CFS/ME. It seems to resemble an illness we know how to treat like multiple sclerosis (MS), chronic viral diseases and autoimmune diseases.

    Around since the late 1980s, this drug is not new to science and medicine. Two phase 3 clinical studies have been completed. The data shows that a subgroup of CFS/ME patients showed marked improvement, even recovery on the drug.

    Yet, that’s not enough evidence for the FDA advisory committee to approve because they would like to see a conclusive biomarker. As a physician, I could live with this decision if I had other effective therapies to treat my CFS/ME patients. But I do not. Moreover, it defies common logic in used in drug approval for other complex immune mediated diseases.

    Take for example, MS: Its earliest approved treatments had opposite immune effects. One interferon increased immune activity and a second interferon quieted immune activity. In the studies that led to approval, MS drugs, like Ampligen, had about a 40 percent success rate.

    Clinical research for these early MS drugs produced no biomarkers other than a patient’s successful response to therapy, such as the case of Ampligen. The biomarker the FDA relied on for approval of MS — seeing if the lesions in a patient’s brain decreased — had no correlation to the patient’s improvement.

    Why would the FDA approve MS drugs before there were concrete biomarkers to determine success? The answer is simple. The advisory panel saw MS as a serious disease that required interventions ASAP, and were willing to accept that clinicians would better understand where to use the first drugs with more experience using them. Now there are seven approved drugs for MS that have significantly improved quality of life for patients. But they are not willing to use the same logic for Ampligen.

    Because CFS/ME patients are stilling waiting for their first therapeutic, Nova Southeastern University (NSU) in Fort Lauderdale, Fla. has brought on board a nationally renowned group of experts to form the NSU College of Osteopathic Medicine Institute for Neuro Immune Medicine, which will open in February.

    These doctors and scientists will conduct basic research using genomics to help further develop drugs to treat this disease, while they treat patients. They are also doing clinical testing for Ampligen.

    With or without a biomarker, the FDA should recognize the seriousness of CFS/ME and approve Ampligen, and open the door for other targeted therapies now.

    Nancy Klimas, M.D., one of the world’s leading researchers and clinicians in chronic fatigue syndrome/myalgic encepahalomyelitis (CFS/ME), is the director of the Nova Southeastern University’s College of Osteopathic Medicine Institute for Neuro Immune Medicine.
    Source: Nova Southeastern University

    • Marieke
      Jan 25 - 9:25 am

      What she says is contradictory. She says, namely that CFS patients reconditioneriong fully recovered and can even go back to work. At least that is her thesis now.

      • Cort Johnson
        Jan 25 - 10:05 am

        I think we should strive for precision in this topic above all; she said that some patients have returned to work and their former athletic pursuits. I just met with Dan Moricolo; he is working but he’s not engaged in any athletic pursuits and he’s still very limited, honestly, but he is working again, he’s getting around town….there are a mixture of results…

      • Sasha
        Jan 25 - 10:09 am

        Hi Marieke – I think she’s saying that a few patients have had extensive recovery but I don’t think she’s claiming that for most. I think she’s saying that with her sub-anaerobic threshold protocol, many patients can improve somewhat.

        This kind of potential for confusion is why I’d really like a clear statement from her, in one or two sentences that we can quote all over the internet and to media, about the difference between what she’s saying and the claims made for GET. Or even clarity about not claiming that all patients can completely recover if they follow her protocol.

    • Cort Johnson
      Jan 25 - 10:07 am

      I still can’t believe Komaroff voted no on every question….He was one of only five of the committee members to do that..I have a blog coming out soon on the meeting.

      • floydguy
        Jan 25 - 12:40 pm

        Komaroff takes an extremely conservative position in his work. He also promotes the concept of minimal testing for patients – something I find to be even worse than not approving Ampligen. He doesn’t treat anything unless the CDC, major insurance companies and other establishment types would unanimously agree on whatever the treatment is. For whatever reason Komaroff won’t push the envelope – even a little bit.

        Remember that Komaroff is the epitome of “conventional” medicine: Harvard Medical School professor and editor, formerly in charge of Internal Medicine at Brigham and Womens (a primary Harvard teaching hospital). He also had a hand in the ridiculous Fukuda definition and has been on the government bench for 25 years. With this in mind, I do not find it surprising Komaroff did not vote in the affirmative.

        His time has come and gone – he’s in his mid 70s – time to pass the baton IMO.

        • Cort Johnson
          Jan 25 - 12:57 pm

          I was sitting next to Kim McCleary during the vote…After he voted no the second I start squirming a bit and asked “Is he going to vote Yes on anything?” She said “No”

    • Annie
      Jan 25 - 11:46 am

      Thanks for this Sasha. I can’t work out when she refers to exercise therapy here she is alluding to the traditional GET or includes her own exercise therapy. I agree with everyone that I wish she had chosen better wording for her movement therapy

  37. Curiosity
    Jan 25 - 11:24 am

    I have great hope for the research underneath these claims. I feel profoundly grateful to have Dr. Klimas working on our behalf. Is there a way that patients can contribute to what she is doing, or support her work financially?

    I very strongly agree that I wish she would replace the word “exercise” when she’s speaking about this, to avoid the potential for misinterpretation.

    I know that in presenting a new development, one wants to present the most sensational parts first, but I wish that she could emphasize more strongly the limitations of what she was suggesting here. I think the full story of what she is saying probably has merit. …But I fear greatly that the “take away” for doctors who aren’t bothering to look at it in detail will be much more harmful than good.

    I do have some significant qualms about the way she’s phrased things, though. I am a bedbound patient. But deconditioning did not bring on my POTS, and it is not what’s responsible for keeping me here (like many others, the POTS and other issues showed up long before I stopped trying to press on). In fact, since learning to truly rest here, I am getting progressively better rather than worse. I can also bring on a crash through mental activity, and my mental faculties have no reason to be deconditioned. That slant does not fit the evidence.

    I wish that she could just focus on the “we may be able to avoid CNS malfunctions by approaching movement extremely gradually” rather than “deconditioning is responsible for suffering” bit. I think many of us could get behind that, and with far less risk for misinterpretation by other physicians.

    I am also a person who has had periods of significant remission several times already. Maybe resting a lot and very gradually increasing my natural activity level as I felt able had something to do with that. But I feel strongly that the resting piece was more critical than the activity piece. People will naturally increase what they do as they feel able to do it, right? Or maybe I have some lucky twist of genetics that made it possible for me that has nothing to do with any of that. I don’t know. I am very interested to see where Dr. Klimas’s research leads. Though I do dearly wish that she could shift the headline that currently comes with it.

    • Annie
      Jan 25 - 11:46 am

      Agree with all that you said, Curiousity

  38. Pam
    Jan 25 - 3:18 pm

    I first got sick in 1979 after 2 weeks of flu which left me with aweful vertigo/migraine attacks that never left me, however I had good energy until 1997 when I had periods of severe viruses and infections which left me unable to walk any distance by 2000 and I crashed completely and had to give up work. I developed POTS within a couple of years.

    For me my immune system was so weak and I had severe ANS problems too. However I did keep trying to walk almost every day for around 20 minutes because I had a dog who needed walking. On many days I was too ill to do this but since having some treatment in the form of thyroid medication, adrenal meds including daily steroids (for over 10 years now), plus low dose betablocker and more recently low dose methylcobalamin injections plus methylation support and just 1/4 Fludrocortisone I walk for around 30 minutes 6 days out of 7. I still get knackered at the end of the walk but I then breathe oxygen from a concentrator for up to an hour 3 times a day which helps me to feel more normal and gives me some energy back.

    I notice a massive difference on the days I take the tiny bit of Fludro. My legs and body just feel stronger and I am able to do a lot more physically. However I often develop horrendous migraines on the Fludro and have to stop it so then I go backwards and struggle on my walks with anxiety, raised heartbeats and sometimes quite severe dizziness plus of course my dead legs as I call them. I can feel absolutely dreadful at the end of a walk if I haven’t taken any Fludro.

    Recently I have been worse because I have a Beagle puppy who has way too much energy and I have just had to take the Fludro otherwise I feel like I am in a crash and can feel terrible. I can honestly say that for me none of this would be possible without the adrenal/thyroid/betablocker meds etc so I understand how severe sufferers must feel when they read articles like this if they haven’t been able to access any treatment.

    Finally you would think that with all the extra walking I have done since having the puppy (he is now 6 months old) my immune system problems would be a lot worse. In fact I have just had my first normal cold in over 6 years. It only lasted just over 2 days which amazed me but looked as if it might be nasty with my nose running like a tap and aching teeth on the 1st day. I put this down to the B12 injections and also breathing daily oxygen.

  39. Tania Selth
    Jan 25 - 5:34 pm

    “The ANS/Immune system cascade in ME/CFS suggests that if you can stop the autonomic nervous system from blowing up you may be able stop the immune cascade with all the nasty inflammation that follows.”

    Very interesting. I have just moved house and what I noticed was that. My ANS blows up first… and then I ended up virally .. cough and ear ache (I still now have a slight cough). Ive noticed for a while now that my ANS issues blow up more before my ME does.

    As far as exercise goes for my severe ANS issues (dysautonomia.. POTS and orthostatic hypertension along, narrowing of the pulse pressure etc etc) for myself, Im in the subgroup of dysautonomia ME people who to which activity increases ie exercise ..doesnt work for.

    When my dysautonomia was fairly bad eg I couldnt stand without a risk of unconscious collapse but I could be upright if I kept moving,. I made my own exercise program up (after much experiementaion) and found I could actually exercise. Exercise for myself thou I found has to be done in a set way.. eg if I constantly chopped and changed what I was doing as I did it I was okay. I ended up settling on 2 hrs of exercise a day (taken in one hit) in which I ran for 50 seconds then walked (not brisk.. the idea of the walk was to rest and get heart rate down) till I felt like running again (in my case it was walking for 1 to 2.5mins) then run again as long as I could without issues (another 50 seconds).

    I could do this exercise over and over for 2 hrs straight (and without a down turn the next day). I did this daily for months so I certainly wasnt deconditioned. I stopped doing that as I found my endurance and fitness didnt really increase after months (so at that point was feeling extremely disheartened over it.. over doing all this exercise and finding no health benefits at all out of it). I was watching The Biggest Looser at the time and started this exercise program of mine when they started theirs.. I watched them… some of them couldnt run at all at first and had trouble walking 200m…they went from that.. to running 10 kms by the end of the show. My improvement thou after months… my endurance had increased by just FIVE SECONDS in the run and it hadnt improved my POTS or any of my other symptoms either. I felt sooo bummed out about it. I stopped bothering to try to exercise at that point as I’d rather be using my active time more usefully eg to try to get what needs to be done in my house.

    **** Note.. with this exercise thing. Not exercising when it was at all warm was very important in my case.. if I got warm.. my POTS would kick in so bad I couldnt exercise at all. So I was doing this run/walking thing late at night (middle of winter even doing it when it was raining and storming) and while wearing wet clothes (almost shivering at times) to hold the POTS at bay.

    I respect Dr Kllimas and really really hope she makes it quite clear in her talk that this exercise thing doesnt help some of us. (In my case I strongly suspect I have Mast cell disorder going on too due to having a family history of it along with severe mito issues.. I cant do anything repetitive with the muscles.. hence why chop and changing between running and walking may be also helpful to more some).

    • Annie
      Jan 26 - 2:39 pm

      You write you are in the dysautonomia M.e subgroup which increases in exercise doesn’t work for. I may be misunderstanding you and you are referring to those with M.E and marked dysautonomia and not all people with m.e, but i would suggest, despite what Klimas claims, very few people with m.e find they can make much improvement from increases in exercise. Pacing can help them manage the symptoms better but many find they can’t extend their limits even through careful pacing, or if they can, they aren’t significant.

      I’m sorry you couldn’t improve your endurance with your routine. 2 hours exercise, albeit chopping and changing between running and walking, is way beyond the reach for many with m.e. I can manage a few steps on a good day! 99% of my day I am lying flat on the sofa or in bed, mainly in bed. Others I know are worse…

  40. tatt
    Jan 26 - 5:35 am

    About 9 years ago I was suffering from dizziness, mental fog and various other problems including deconditioning. I probably met the definition of ME but kept away from doctors. A gluten free diet gave me my brain back and I was well for several years. Excessive exercise caused a very severe relapse, so much so that I was practically bedbound – and formally diagnosed with ME. This doesn’t really fit with the deconditioning theory since a dietary change could restore normal functioning and exercise worsen it.

    I wonder what else was changing in the lives of those who have recovered.

  41. LJ
    Jan 26 - 8:36 am

    It was this kind of advice that contributed to my moderate ME/CFS (able to work) to severe (housebound/bedridden) — which happened overnight (I was not deconditioned at the time). It is also this kind of advice that caused my already severe ME/CFS to go into a rapid, downward spiral several years ago. Prior to this exercise program, I was bedridden but able to sit up for up to an hour, get around lightly in my wheelchair, perform light stretches in bed. After attempting this type of exercise program (all while maintaining a low heart rate), I had a crash so severe that I could barely turn in bed. My heart rate began to jump to over 130 just from sitting up and drinking water in bed. It doesn’t matter whether my heart rate remains low — any repetitive movement (or even some types of non-repetitive movement) sets me back tremendously. Dr. Klimas needs to be very careful about what she’s advising, and make note of the fact that this kind of program has the potential to severely worsen a patient’s case. To not do so is highly irresponsible. Very disappointed in Dr. Klimas, whom I had thought highly of in the past.

    • Cort Johnson
      Jan 26 - 4:35 pm

      The advice was not to do any activity that made you get worse … Are you sure that you’re referring to the same type of program?

      Dr. Peterson lauded this kind of program at the NSU Celebration. I don’t know what went wrong with your program but it clearly works for some people and doctors do appear to have good experience with it.

      • Charlotte
        Jan 26 - 5:44 pm

        Were we listening to the same webcast, Cort?

        Dr. Peterson politely told Dr. Sol that he found his patients hit their AT at 90 seconds, and that was usually while engaging in activities of daily living.

        Thank you, Dr. Peterson.

      • LJ
        Jan 27 - 8:28 am

        That’s almost funny — that she advises not to do something that makes you worse. Does she not realize that that line is often invisible? It’s not as simple as knowing your heart rate, and not pushing over that line. It doesn’t matter if my heart rate remains below my anerobic threshold. Any wrong movement, even if my heart rate is low/normal, can cause a crash for me. This can include brushing my teeth or reaching for a glass of water too quickly. I don’t’ think Dr. Klimas is considering the severely ill here.

  42. Charlotte
    Jan 26 - 5:41 pm

    I just listened to Dr. Klimas’ webcast of the seminar held at her new clinic. Among others, Dr. Peterson was there. He politely told Dr. Sol that he found his patients hit their AT at 90 seconds, and that was usually while engaging in activities of daily living.

    Thank you, Dr. Peterson.

  43. tatt
    Jan 27 - 4:27 am

    think you are missing the point, Cort. Dr. Klimas may be very careful about what she is recommending but other doctors, especially in the UK, will seize on this to suggest exercise rather than movement and for all patients. My doctors advised me to exercise, no warning about the risks – I was recovering and am now more severe. The PACE trial in the UK did not result in significant improvements such as returning to work for many patients, some were made worse.

    I’m now ready to try increasing my activity levels again, after benefiting from various nutritional supplements. It is useful to have advice about how to start a movement programme (making sure to keep rate rate low and not doing anything that may make you worse) but it can be very difficult to keep under the “not make you worse” threshold and that can provoke a severe deterioration for some people. Those of us who suffered severe deterioration from exercise are naturally nervous about working with anyone who doesn’t explicitly state that can happen.

    Dr Klimas has presumably been treating these patients for years. I still wonder what else had happened to them before they reached a stage at which they could manage a movement program.

    • Cort Johnson
      Jan 27 - 7:39 pm

      When Dan started his exercise program, which is now really a yoga program, I think, it was very short and he took breaks inside it and he only did it 2 days a week…(and if he wasn’t feeling well he skipped a session)…it hardly any exercise at all.

      Yet from that small start…its incredible how much progress he’s made. He’s nowhere near healthy but he’s working from home six days a week; he drives all over the place, he lifts heavy camera equipment easily…honestly it’s just astonishing the difference.

      He also meditates and blood volume replenishment is very important; he uses a product called NUUN

      • Sasha
        Jan 28 - 4:05 am

        Was Dan getting other treatment too?

        I sometimes wonder if successful exercise programmes are actually exercise capacity increasing because of underlying improvement rather than the exercise driving the improvement. I think it can be very hard to tell.

  44. Sasha
    Jan 27 - 6:39 am

    I’ve been thinking hard about this over the last few days and have been using a heart rate monitor (a finger pulse oximeter) to see what my heart rate is doing in ordinary daily activities.

    I’m recovering from a bug so haven’t been able to go outside and walk but so far, just unloading the dishwasher put me over what I calculated to be my anaerobic threshold of 0.6 x (220 – my age). I’ll bet my normal walk to the coffee shop puts me over.

    I wonder if any improvement that this programme gives is not due to the exercise component but to the avoidance of activity over the anaerobic threshold in the patient’s normal daily activities. If you never go over your threshold, presumably your ANS never tanks and neither then does your immune system.

    Enough days of not having your immune system tanking, maybe that gives your body a chance to do some healing and your exercise capacity will naturally increase, even without you doing any ‘exercise’?

    • Sasha
      Jan 27 - 8:02 am

      Just been out for a short walk to take out the not-very-heavy trash (110 bpm), walk eight minutes to the coffee shop (110 bpm at times), come back and walk up the slight slope to my apartment building (120 bpm) and up two flights of stairs to my apartment (128 bpm).

      Using Dr Klimas’s equation, I calculate my anaerobic threshold to be 100 bpm :(

      I guess I’m going to have to do these things more slowly if I want to stay below that threshold. I’m not even sure if it’s possible to get up those stairs and stay under 100 bpm.

      Lots of questions to ask about this. I really wish that Dr Klimas would do a Q&A with patients. A lot of us are probably going to have to cut back our activity a lot to stay under that calculated threshold. If you’d be housebound if you stuck to it, is that what you should do? Lots of questions…

      • Cort Johnson
        Jan 27 - 7:30 pm

        Dan Moricoli has greatly increased his endurance while keeping his heart rate below 90! Another person I talked too started out about 95 and she can get up to 115 I think without issue.

        Its not just heart rate; she can keep her heart below 95 and work all day….and crash….Breaks are very important in this protocol….

        Dan videotaped the NOVA and came back wiped out – because he couldn’t get the couple of breaks he needed to lie down, get the blood flowing back to his head and so forth

  45. tatt
    Jan 28 - 2:27 am

    having now read a bit more about the two patients cited as success stories – one got an infection treated and one wasn’t pacing themselves properly and learnt to do so. Seems to me that instead of “exercise is the answer to all the problems” you could say the important messages were don’t overdo it and have your infections treated.

    The message I take from this is that pacing is easier if you have a heart rate monitor and that if you eliminate over activity you may be able to increase activity levels in time. I can work with that, I’m looking for a heart rate monitor.

  46. tatt
    Jan 28 - 2:28 pm

    Sasha I have a finger pulse oximeter and its heart rate measurement is way off. Unless you’ve checked it against something else might be best not to rely on it. I’ve just ordered myself a heart rate monitor.

  47. tee
    Jan 28 - 3:09 pm

    Ive had cfs and mcs since 1987 when I was an art student in a very toxic environment, and also had a flu bug, or flu like symptoms from the chemical exposures. Ive been on disability since, with some months or years that were really good, and others, like now that are very bad. I often cant attribute the changes to any specific thing, but my best years have been since I moved to the AZ high desert. My ability/inability to exercise is one of the biggest variables in my health so I am very interested in this discussion. Since getting cfs/mcs, I have varied from vigorous hiking ability to currently standing is challenging. I am in a relapse now due to a frozen shoulder that gave me pain and very little sleep for 5 months and when that resolved and I began being up and around more…POTS struck. I know I was deconditioned as the very little sleep had me worn down so I wasnt active. I then went on to have night sweats which have disturbed my sleep for the last 14 months post-shoulder issue. I am trying to get my female hormones right, and will be trying low dose cortisol soon. My am pulse is usually in the 60s, when I rise it goes up over 100, and standing to cook or wash dishes can get to 129. Standing is the worst. I am usually a bit less reactive to postural changes as the day goes on. I try not to lay around. I have been trying to maintain a 20 minute slow walk as I can, sometimes I cant, but when I can, I do it. I think what I take away from this discussion is that there can be a relationship between POTS and deconditioning, and I may be more successful when I do try to come back from the no exercise capacity, that its a useful tool to be mindful of my heart rate. I instinctively knew to be gentle with myself as since cfs/mcsI have never been able to push things like a normal person who tries to increase strength and stamina etc..thats deadly. (My last job before art school was as a fitness trainer ha). So its good to have this research going on because this problem is so central to cfs. The best thing of course is to listen to what my body is saying, which may not be what I want to hear at all, but attention to heart rate as I try to do some minor activity is a new idea for me and I will be checking it out. It is definately exhausting to have the heart rate elevated for long periods from life tasks alone.

    • Cort Johnson
      Jan 28 - 3:28 pm

      Tee – you might want to focus on doing exercises lying down or while sitting; that might improve your conditioning and get your heart rate down when you stand. You might also want to focus on blood volume enhancement with NUUN, salt loading or other electrolyte enhancers.

  48. Matthew Applegate
    Feb 09 - 9:59 pm

    Aerobic type exercise would send me into a crash; there’s no way I could walk/treadmill/bike for 15 minutes at even the lowest rate. Though I have CFIDS, I’m not ‘deconditioned’ significantly. I’ve have orthostatic intolerance for years. Worth mentioning are these differences in what I’ve been doing for months compared to this article:

    Machines intended for anaerobic exercise of individual muscles are aerobic when you do single sets of at least 30 reps, and are recumbent in that every exercise is sitting down.

    (220-age)*0.60 appears right for ‘deconditioned’ but I’ve been using (220-age) *0.80. (140bpm at age 45)

    I workout much less than two minutes then rest two minutes. A style called HIIRT is to workout 30 seconds and rest two minutes.

    I ‘feel the burn’ on every single set, and feel I’m doing too much. This article has inspired me to write notes to figure out the weight required to feel the burn at 40reps, and do 30 reps at that weight for each exercise every single day.

    Being the 98th comment, not sure who will see this. My $0.02.

    • Cort Johnson
      Feb 09 - 11:32 pm

      Thanks Mathew,

      According to Dr. Klimas exercise physiologist – you’re doing too much. You should not feel ANYTHING! (And they call this exercise :))

      Check your heart rate monitor when you wake up in the morning…If it edges up you’re doing too much as well. This is really, really mild stuff.

      Please keep us posted :)

  49. throughhiker
    Feb 19 - 10:24 am

    I am concerned about the over-emphasis on heart rate in the presentation of Klimas’s work. It makes sense that keeping under the anaerobic threshold is critical, but as others have noted, that’s not sufficient.

    I am currently about 98% bedbound (in bed lying flat except to sit up and eat or walk to the bathroom), and I find that, although standing at the sink and filling the tea kettle puts my heart rate over 130 bpm, I can lie flat on my back and do gentle leg lifts without going over 90 bpm. (I’m just coming to realize the extent of my orthostatic intolerance.) But, as I know from 8 years of experience, that absolutely does not mean that I can do leg lifts for as long as my heart rate stays low!!! Even with a low heart rate, if I were to do long routines of even very gentle exercises, I would get hammered with PEM (there must be a better term for this).

    However, inspired by what I’ve been reading from Klimas and Stevens and others, and incorporating what I already know about my own body from experience, I am trying very gentle exercises in a prone position with tons of rest interspersed. The ratio of “exercise” to rest is about 1:4 or perhaps 1:6. So it takes half an hour on the floor to get about 5 minutes of exercise! My notion is to increase the frequency of this routine first, rather than increasing the amount of exercise within the routine. If anyone would like to follow my progress and my other attempts to address orthostatic intolerance, I am blogging here: throughhikerlife@wordpress.com

    And, even though I don’t think heart rate is a sufficient measure of safety, I do think it is a critical one. I have begun to wear a HR monitor around the clock, and I don’t think anyone with ME/CFS should be without one. The amount of information you gain is astounding!

    Thanks, Cort, for all your service to the patient (impatient) community!

    • Cort Johnson
      Feb 19 - 10:35 am

      Thanks Throughhiker,

      I think how important resting is between exercises is not really well gotten. For Dan Moricoli the rest period was crucial. Good luck on the program; it’ll be interesting to see how it goes. if some of your POTS is due to being bedbound it could ultimately be very helpful in getting you up again…Time will tell. Thanks for the link; I look forward to checking out your site. :)

  50. throughhiker
    Feb 19 - 10:27 am

    Sorry, I mis-typed my ME/CFS blog site above. It is throughhikerlife.wordpress.com.

  51. jimmy
    Jun 03 - 3:09 am

    I agree with most everyone on this issue. as a child I had I believe a weekend immune system with colds and flus that would last 3 weeks at a time. My health issues would get better again. It never reached the level to stop me from living my life until I turned 21 or so and lost my capacity one day to play sports. There was no deconditioning prior to that day. I was not even sick. Then years later it got worse as far as my immune system and crazy fatigue. I new I was bound for cancer because of how my body felt and how my immune system was compromised. I did get cancer about a year and a half ago. I have always eaten well. I was an athlete in younger days. I have no family history of cancer. no doubt what caused it. I also have a lot of white matter in my brain. Actually my mother and sister have the same white matter but not cfs. I am a new patient of doc Klimas

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