arrow27 Comments
  1. VLynx
    Jul 22 - 6:34 pm

    Back when I was doing my pain medicine fellowship (2006-7, University of Utah), I did my end of year presentation on the long term effects of uncontrolled chronic pain. One of these effects was decreased grey matter in the brain. However, it was not possible to determine whether that effect was due to chronic pain or to decreased motor activity resulting from the chronic pain. I don’t have the references in front of me, but research showed that decreased physical activity is in itself associated with decreased gray matter. Not specific to CFS/FMS.

    Thanks for interesting stuff.

    • Cort Johnson
      Jul 23 - 10:34 am

      So just having decreased activity could result in reduced matter- which means the brain basically doesn’t have as many neurons, etc. that it usually does – which can’t help :) Thanks!

  2. Nancy Blake
    Jul 22 - 7:36 pm

    ‘Her ability to further tie reduced pH handling in the muscles to reduced blood flows to the brain directly linked muscle, brain and ANS issues together.’

    This is the first of four references in this article to the importance of blood flow in the problems experienced by ME (and FM) patients. Les Simpson’s extensive work on blood flow and its relevance not only to muscle metabolism problems but also cognitive difficulties, and the problems of endocrine regulation which produce another third of the groups of symptoms in this illness (add in the symptoms of an overactive immune system, and you’ve pretty much got the lot) continues to be either ignored or forgotten.

    He has written about 120 research papers, visited ME conferences and patient groups all over the world, in the late 1990’s and early 2000’s. He is a hemorheologist – a researcher into the physical properties of blood. He has demonstrated that in a number of chronic illnesses, the population of red blood cells begins to contain an inordinate number of cells in irregular shapes (he has identified six) which are unable to deform sufficiently to traverse the capillaries, the micro-circulation, which serves these areas particularly.

    The function of red blood cells is to transport oxygen to the cells (in this case, muscle cells, brain cells and endocrine cells – and to take away the waste products. Normally shaped red blood cells are biconcave discocytes, flat, round, and with a dimple on each side – a shape which enables them to curl up (deform) sufficiently to get through tiny blood vessels which may be half or less their diameter. When the non-deformable cell shapes predominate, the muscles, cognitive areas of the brain, and the endocrine system, all begin to malfunction because of lack of oxygen and the build up of waste products (lactic acid).

    It is absolutely correct that blood flow is the key to these malfunctions. This is why ME patients have low V02 and very low anaerobic thresholds – the aerobic metabolism depends on delivery of oxygen and when this fails, the anaerobic metabolism kicks in – then walking across a room becomes the exertional equivalent of weight lifting or running a marathon, with predictable results. Les’s work provides a very simple and elegant explanation for the way that our symptoms are produced, and why conserving activity is so important – weight-lifting on a moment-by-moment basis isn’t going to do anyone any good.

    He does not claim to know what the changes are in the body which give rise to this response in the red blood cells – just that they are very sensitive to any changes in the environment. His work has been explained to many of the well-known people in the field, and I have no idea why his experimental results aren’t part of the canon of knowledge about ME/CFS.

    One problem might be the importance of immediately fixing the blood samples – if this is not done, and the cells are washed in saline and left around for a while before being micrographed, they do revert to the biconcave discocyte shape – the irregularities disappear. So research which does not use Les’s experimental protocol in this respect will not reproduce his results.

    The reason why this body of scientific research is ignored is a bit of a mystery – hemrheology is not taught in medical school, which means that the rather simple and widely available things which can address this problem, and improve blood flow, hence our well-being, are not routinely advised as helpful for people who have ME. These are 6 g of fish oil a day, or 4 g of genuine EPO (a lot of it isn’t genuine, so use a reliable source), or Vitamin B12 as hydroxocobalamin (injected), or pentoxyfilline (I don’t know much about this.

    Many ME people have been helped by following one or another of these recommendations, although Les has found that none will help every ME patient, and some patients don’t respond at all, and he doesn’t know why this is. But to me this seems to explain so many research results that I read about, while this explanation for the results never gets considered.

    However, reading an article which concludes that what we need to do to link symptoms together is ‘follow the blood’, it seemed important to share this information. (Les has even done a couple of studies which show that ME patients in remission, or even on a good day, will have a much more normal proportion of biconcave discocytes in a blood sample – so the changes in the blood are reflected in the level of symptoms at any given time. I think that, along with other tests, this could provide a biomarker which could support a diagnosis of ME, if other symptoms were also present.

    His work can be found in two books (Blood Viscosity Factors – The Missing Dimension in Modern Medicine, and Ramsay’s Disease – ME, as well as in his many journal publications, including an article in the first issue of the Journal of Invest in ME.)

    • Ria Roegiers
      Jul 23 - 4:39 am

      Very interesting and I think, very important. Thank you!

    • Elizabeth
      Jul 24 - 1:43 am

      Thanks SO much, Nancy, for commenting with this info. I experience severe PEM and hadn’t yet come across Simpson’s work. Thank you again.

    • Suella
      Jul 25 - 2:58 am

      Thank you Nancy! I was just about to post “What about Ramsays Disease explaining at least some of this?”

      Alas, Cort has never responded to my posts on Ramsay’s Disease. I know not why…

  3. Laurie
    Jul 22 - 10:08 pm

    Can anyone tell me how reduced grey matter is determined? Does it show on an MRI?

    Also, has anyone had success with the HeartMath program helping with heart rate variability?

    thanks!

  4. sharon barnes
    Jul 23 - 3:04 am

    Could any one tell me if there is an association with M.E/CFS and confused behaviour. I have for years suffered from bouts of confusion, sometimes whilst in a dream like state.
    I can move objects around/place things in positions I can not find later/sometimes place myself in danger i.e placing a knife in my mouth once and then realising what I was doing/spilling hot drinks on myself.
    I am waiting for an appointment from a Neuro Psychiatrist, but am alarmed at the regular episodes now.

    • Cort Johnson
      Jul 23 - 10:31 am

      Not everybody experiences these things but I think a significant subset of ME/CFS patients experience these weird cognitive lapses. I’ve certainly heard of them many times.

    • dee
      Jul 23 - 9:02 pm

      hi sharon, same here with those problems, that it scares me. times i want to do the strangest things like throw a brick through a window and the things you mentioned too. had to sell my car because of wrong thinking on how to drive! thinking very wrong since M.E./CFS hit! can you please contact me when you see someone? no ones been helpful for me because of no KNOWLEDGE about this illness! no can they help when they have NO knowledge!!!

  5. Kay
    Jul 23 - 9:55 am

    “This study was intriguing because it connected too seemingly separate systems; the muscles and the brain. Explaining the results will require stitching together two systems that are not ordinarily stitched together – a good exercise in a disease that affects so many systems of the body.”

    But aren’t all parts of my body stitched together to make a whole? When are we going to focus on the reason that all of these parts of our bodies are so messed up? In my body when my brain tells my muscles to do a particular thing, some days my muscles can’t process it. So I assume the brain and muscles are connected.

    • Cort Johnson
      Jul 23 - 10:28 am

      Your experience tells you that they are – but proving that abnormalities in one also affect the other is a very different thing.Each system is extremely complex; muscle functioning, for instance, is a complex operation that requires the nerves, the blood, ATP, the lungs, the heart, etc. all to work together in the right way. The brain, of course, is even more complex.

      It’s that kind of complexity that necessarily leaves researchers focusing on one part of the body; i.e. there’s a good reason the ‘big picture’ isn’t viewed more.

      The blog mentions the autonomic nervous system but it could be that motor areas of the brain are affected, or you could have nerve damage in your muscles that keeps them from becoming activated, or trigger points could be affecting blood flows or the SNS may be constricting blood vessels improperly or the message from the brain could be getting through but the mitochondria could be burned out, etc. I’m sure there are many more possibilities.

      Studies like this and the ones I mentioned in the blog that explicitly tie together different systems will help.

      • Gijs
        Jul 23 - 1:41 pm

        The ANS reaction could be for compensation as well. Maybe it is not due to disfunction at all. I am still not convinced.

        • Cort Johnson
          Jul 23 - 2:39 pm

          You’re absolutely right Gijs! I keep forgetting that. Thanks for the reminder.

    • sharon barnes
      Jul 24 - 3:18 am

      Hi Dee…I will post the findings on here for you when the guy eventually gets in touch! The fact that most of my doctors look bemused by this behaviour worries me…my partner/adult daughter seem to be the only people who see the danger in my behaviour. This coupled with my inability to stay awake in certain social situations now i.e I have been robbed on a busy bus…fell asleep whilst standing up at a concert…have fallen asleep whilst having my hair cut etc, has left me isolated and afraid to go out of the house sometimes. As for driving…I don’t trust myself to make decisions which could affect the safety of others, therefore do not really drive anymore and had to fight my local authority to give me a buss pass to get to appointments! From a person who lived life to the max…this is like a living hell for me.

      • Issie
        Jul 24 - 9:39 pm

        Have you had a sleep study done?

        Issie

        • sharon barnes
          Jul 25 - 11:31 am

          Hi Issie…yes, I had an overnight sleep study done…their advice…try and stay awake more during the day!!!!

          • Karen
            Jul 25 - 12:57 pm

            Hi Sharon,

            It appears your experience with sleep “specialists” was about as helpful as mine. When I described serious side effects of the medication prescribed by the first specialist I saw — the worst involving losing consciousness while driving, luckily on a straight road — his response was “Well, then, don’t drive”. The “sleep deprivation” program prescribed by the second specialist I saw caused severe cardiac symptoms, I wondered each night when I went to bed if I’d awaken the following morning. He was completely unconcerned. Overall, I’d have to say the doctors I’ve encountered with training in this area are the least receptive to patient concerns. They don’t listen, and pay more attention to their complex diagnostic tests than to the patient.

            Good luck with the advice to “try and stay awake more during the day”!

            Karen

            • sharon barnes
              Jul 29 - 6:42 pm

              That’s not the worst case of “ignorance”, so I carry on regardless Karen.
              One locum GP last year told me that he thought my symptoms were due to my Bipolar medication…when I told them that I was aware of the difference after many years with M.E, he refused to speak to me whilst typing on his computer…spent the next ten mins without giving me eye contact and still referred me to my Consultant Psychiatrist for more investigations. My consultant then informed me that as far as he was concerned, M.E is psychosomatic and all in our heads…these people are still living in the dark ages and should be grunting and dragging their womenfolk around by their hair!
              It’s bad enough being treated by some people in society who think it is still malingering, without supposedly intelligent people dismissing the condition completely!
              On the subject of driving, I find it alarming that the DVLA do not consider M.E/CFS in their assessment for suitability to drive. They do yearly assesments on Bipolar, yet dismiss the fact that M.E/CFS is far more constrictive and like many others, I police myself when my symptoms are bad.

              • Cort Johnson
                Jul 29 - 6:49 pm

                Ugh… the fact that he was willing to openly say that sucks even more…

                I take it you are in the UK ….

  6. Thomas
    Jul 23 - 5:22 pm

    “Our findings add to the growing body of evidence linking autonomic dysfunction to the symptomatology in this poorly understood disease”

    Seriously? Like they’re just thinking their may be a connection now? This illness or a vast majority of it’s symptomatology is derived from autonomic dysfunction and reduced blood flow to capillary beds. Get with the times, people. Jeez.

  7. Carol Carlson
    Jul 23 - 8:47 pm

    Cort, I wish you would stop using “Chronic Fatigue Syndrome” – CFS. Why don’t you use M.E.? I believe, as do a great percentage of patients and advocates, that using CFS is doing a disservice to those who suffer from M.E.

    • Megan K
      Jul 24 - 4:34 pm

      I agree with Carol on the use of CFS, fatigue is just one of the many symptoms. A syndrome, to me, is not taken as seriously as a more specific disease. I have issues with it sounding a little too vague. I do appreciate all the wealth of info you put out on this blog. It has really been the only tool for learning about what we all share. Thank you

  8. tatt
    Jul 24 - 12:01 am

    some very helpful work on ME is being done by people in Newcastle who are researching fatigue, it is no longer a term that is unhelpful. I wish the ME community would grow up, stop making a great fuss over terminology and celebrate people like cort who do great work.

    • BONNIE JOHNSON
      Jul 27 - 3:34 pm

      I AGEE, TATT–I DON’T LIKE THE NAME EITHER BUT AT LEAST IT’S MORE RECOGNIZABLE TO PEOPLE NOW. I ALREADY DO ENUF EXPLAINING; ONLY USING M.E. WOULD BE MORE CONFUSING! DITTO TO THE GREAT WORK CORT IS DOING. FROM LITTLE INFO TO MORE THAN I CAN MANAGE NOW!

  9. sharon barnes
    Jul 25 - 11:32 am

    Hi Tatt…do you have an address for the Newcastle Research?

  10. Jen
    Jul 25 - 4:13 pm

    Alpha KG

    Great timing of this article for me. I’m trying to re-instate my 80 supplements a day protocol. I lapsed for the first time in three years. Following 9 weeks of stress and grief I found I couldn’t stomach food, let alone supplements. Naturally my overall health has declined, but I am beginning to turn it around again :)
    One supplement I know I am really missing the impact of is Alpha KG, prescribed to manage the lactic acid issue. When I first started this it was instant. I was like the tin man who had been greased. I could move so much easier. I never thought about the brain having the pH issue, so thanks for this information, it may explain my severe cognitive decline too.
    cheerio

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