Wrong Name – Real Illness
“… for the scientists and clinicians in the field, the phenomenon (chronic fatigue syndrome) is as real as diabetes or atherosclerosis” – Miriam Tucker
Think physicians aren’t interested in chronic fatigue syndrome? They may not be good at treating it and many may not know much about it, but a recent article suggests physicians who are committed to keeping up with the news are definitely interested. Almost two weeks after Medscape published an article on chronic fatigue syndrome (ME/CFS) titled “Wrong Name Real Illness” it was still – according to the physicians on Medscape (not patients) – the most popular article on the huge Medscape website.
Two articles in mainstream medical publications suggest the medical profession is finally beginning to listen…
Miriam Tucker has been writing on chronic illness for almost thirty years. Her ME/CFS article emphasizing that chronic fatigue syndrome is real and serious cites professionals ranging from Dr. Komaroff to Dr. Montoya to Ron Davis to prove it. Portrayed as an aberrant immune response causing chronic inflammation, autonomic nervous system and HPA axis problems, Tucker provides a thorough overview of the disorder’s symptoms and those it affects.
Tucker knows her audiences biases well, and spends some time demonstrating that ME/CFS is not depression. She points out to the physicians in the audience that the trigger for ME/CFS – a flu-like illness in almost 80% of people with ME/CFS in one study – is VERY different from that found in depression. The long laundry list of to do’s ME/CFS patients usually respond with when asked what they would be doing if they weren’t sick is also different from those seen in depression. In perhaps something of an understatement (and one that is very relevant to the comments section) Dr. Komaroff states that in depression “there is an apathy … [people with ME/CFS] are more angry and frustrated. They want to get better”.
[For more on depression and chronic fatigue syndrome:- Depression in Adolescence – Is it Really Chronic Fatigue Syndrome?
- How to Prove to Your Doctor You’ve Got Chronic Fatigue Syndrome (ME/CFS) And Are Not Just Depressed]
Tucker highlights several significant findings in ME/CFS research including the strange responses to exercise that “far exceed” those associated with deconditioning, natural killer cell cytotoxicity, Dr. Chia’s gut enterovirus findings, increased pro-inflammatory cytokines, possible increased risk of lymphoma, autonomic nervous system dysregulation, and the Ampligen and Rituximab trials.
Montoya’s early results suggest ME/CFS patients have a genetic predisposition to produce an “overwhelming” inflammatory response to infection
Some really good preliminary results from the enormous Montoya/Davis Stanford immune study underway apparently prompted Dr. Montoya to state in no uncertain terms that ME/CFS is an inflammatory/autoimmune disorder.
[Gene expression results from another as-yet-unpublished Stanford study that found ME/CFS looks most like “systemic inflammatory disorder” suggest the same.)“There is a genetic predisposition for an overwhelming inflammatory response to an infectious agent that was supposed to help the patient but is overwhelming, triggering a tremendous inflammatory cascade.”
Tucker also thankfully devotes an entire page to the poor funding ME/CFS research highlighting the disparity in NIH funding between the much larger chronic fatigue syndrome community ($5 million/year – 1 million people) and the 400,000 person multiple sclerosis community ($115 million/year – 400,000 people) receives.
The medical practitioners commenting on the article gave a good snapshot of where we stand. The profoundly ignorant, head in the sand side of medicine was represented: “I personally think cfs is a good excuse for people who do not want to work and unable to cope with everyday common stresses” (a general practitioner) but many others – mostly doctors and nurses – felt the article represented the disorder well. One mental health practitioner who remembered paraplegia patients being treated for “conversion disorder” in the 1980’s suggested that it was time that MDs “grew up”.
A psychologist, however, who insisted ME/CFS was, yes, psychological and definitely sent some patients not into depression (AKA Komaroff) but into anger. The comment section turned into something of a battle zone at one point, something Medscape is probably not accustomed to seeing (and which probably didn’t help much).
Beyond Tired
“We as psychologists have a tremendous amount to contribute to the CFS community. But it has to be an appropriate role. We can’t further stigmatize these patients.” – Lenny Jason
Even more surprising was the “Beyond Tired” article by Kirsten Weir that appeared on the American Psychological Association’s website in October of last year. The APA is the last place one would expect an article highlighting some of ME/CFS’s biological factors and taking psychologists to task for promoting CBT as a cure, but there it was…
[And there was Lenny Jason a month or so ago winning an award from the APA was well …Times are indeed changing.
The realization that dismissive attitudes that were causing real harm helped push Dr. Klimas deeper into the field
Addressing her audience’s biases as well, Weir asserted that dismissive attitudes in the medical profession have caused real damage. Yes, the name is awful; it’s true there is no good definition and diagnosis is murky; but none of those factors are a reason, Weir asserts, to leave people without medical support – and that’s precisely what has happened.
Noting that people with ME/CFS are “still having trouble getting friends, family and even their own physicians to take their symptoms seriously”, Weir was not surprised to hear Dr. Lenny Jason say that “patients are absolutely furious”.
Not just furious, though, as Anna Zapp, an 8-year ME/CFS patient, noted – ” they’re also “terrified, devastated and desperate”. Being rejected by the medical profession as your health is going down the tubes breeds a special kind of isolation and distress. In fact, a 1992 study by Dr. Klimas attributed some of the high rates of PTSD found in the disorder to simply being rejected by the medical community.
The realization that doctors were doing harm rather than good to many in the ME/CFS community helped, Dr. Klimas said, drive her deeper into the field.
[A recent Health Rising survey found that almost 80% of those polled said a negative experience involving a ME/CFS or FM diagnosis had put them off from seeing a doctor later. Sixty percent experienced negative consequences from doing that, and seventy-four percent suspected their diagnosis had led them to receive substandard care. Should You Tell Your Doctor You Have Chronic Fatigue Syndrome or Fibromyalgia?]“It was a pivotal moment for me. In a culture where we’re supposed to ‘first do no harm,’ we saw harm happening time and time again by doctors who tried to put it back on the patient.”
Weir next focuses on immune findings, inflammation and the basal ganglia, and then cleverly jumps to another topic her audience should understand well – cognitive problems. She highlights the exciting Zinn brain scan results (unpublished) which suggest that high levels of delta waves are leaving ME/CFS patients like walking zombies – more asleep than awake – during the day. The findings are strong enough for Zinn, who has ME/CFS, to state that “We’ve shown people actually do have brain fog.”
Then Lenny Jason deconstructs the PACE trial while emphasizing that CBT is not a cure for ME/CFS and should not be promoted as such. Instead, Carolynn Bartosh, a patient, nicely puts CBT and other such therapies in their rightful place – as helpful aids to reduce the effects of the big and smaller losses the disorder leaves in its wake.
This excellent article ends with Lenny Jason, a psychologist, imploring other psychologists to not stigmatize people with ME/CFS but to bring the good tools they do have to bear on the illness.
Barriers to taking chronic fatigue syndrome seriously are slowly falling
Conclusion
Many good articles have now appeared in the popular media on ME/CFS, but these two on medical websites targeted at practitioners and researchers suggest the old ideas are fading in some of the more hidebound portions of the medical community. The tide is slowly continuing to turn.
We could do with those articles and more like them appearing in the UK media, Cort. The PACE trial “fear of exercise” recent rehash resulted once again in unfavourable articles appearing in most UK national daily papers; these articles were remarkably similar in content, due in part perhaps to the ‘independent’ Science Media Centre telling journalists too lazy to bother doing their own research what to say. Only the ‘Daily Mail’ has provided any balance. There is so much real, sound science proving the physiological basis of ME [CFS] – like your excellent recent round-up of developments in 2014 – and so little [or none ?] supporting the “all in the mind” mantra much beloved by so many psychiatrists, yet this imbalance never makes headlines in the mainstream media here. How can a bunch of unproven theories [show me a scan indicating brain damage caused by Munchausen Syndrome by Proxy!] get far more media coverage than study after study you highlight for us on these pages ?
You’ve got a tough row to hoe over there Stephen! It must be disappointing but hang in there…You’ve got great advocacy groups and I really like that collaborative effort between groups and researchers to promote more funding. Hopefully the tide – slowly – is turning….
A collaborative would be great if all members acknowledged the illness was an organic illness even if there are different ideas on the underlying pathology. But as you must know, psychs such as Peter White, one of the PACE trial authors, are part of the UK collaborative on M.E which in my mind weakens its potential considerably.
I’m happy for any progress. It’s just been such a long time. We feel so bad that it seems it will never be ok again. Hipjaven@gmail.com. Thank you Cort, for blogging. Keeps me informed.
This is very encouraging, Cort – thanks!
Just saw this in a UK news outlet:
http://www.dailymail.co.uk/health/article-2861107/I-d-CANCER-chronic-fatigue-syndrome-Woman-s-battled-condition-10-years-says-people-unfairly-labelled-attention-seekers.html
I thought this was right in line with the recent trend of more media articles identifying CFS/ME as a genuine physical disease such as Cort is reporting about.
Thanks Jim!
Thanks for these wonderful blogs. They have helped me to gain insights into what might be wrong with my health. I have had reactive depression in the past and I can assure you that it is entirely different from the muscle weakness, fatigue, brain fog, un-refreshing sleep and post exercise malaise that I have been experiencing.
I don’t know if that’s good news or not – but at least you’re clear about what you have 🙂
Thanks, Cort, for your excellence in writing.
This report allows me to feel hopeful that, someday, we may finally be treated with dignity by the medical profession. Respect and validation will make a huge difference in the lives of so many, including me.
Perhaps soon our greatest challenge will no longer be mere survival, but instead might be the release of frustration and anger left from years of neglect and abuse.
Amen!
Is the Medscape article available to the public? I couldn’t access it from the link.
To my understanding, you should be able to sign up on Medscape for free and then be able to read the articles. It’s a pretty quick process.
Yes sir!!
I must be one lucky patient, I found the most amazingly up-to-date CFS doctor over six years ago and he has been my ongoing practitioner all these years. He has a dip ed in naturapathy and a more than excellent interest in many difficult chronic conditions. I always feel validated and treated with dignity by this medical professional.
Hi Anna Maria, I was wondering what area your doctor practices in. I have been chronically ill for at least 15 yrs. & my latest diagnosis is Chronic Fatigue/Fibromyalgia. I have yet to find a dr. that knows or cares enough about either of them to help treat his patients. I have a slew of symptoms & gastro issues that I believe this may all or partially be stemming from. I would appreciate any info. you can give me. I live in central New Jersey. Thank you so much for your time!
Regards,
Karen Carr
Hi Karen! I would recommend Dr. Stuart Freedenfeld. He has a very good understanding of our illness.
56 South Main St.
Stockton, NJ 08559
609-397-8585
You don’t have to convince me it’s real cause I live with it everyday. It destroyed my life as I once knew it. However, I worked as an ER nurse my entire career until I got so sick, weak and kept having near fainting spells and ending down on the floor with allot more symptoms too. And I can tell you this………..every time we got a patient in the ER and if they shared with us in their PMH that they had CFS and/or Fibromyalgia………….the truth be had, they were not taken that seriously and their care was not top rated. Why……..the very large majority of healthcare workers don’t believe it exsist cause they feel the routine blood work is always normal and eventually they will send you to a few different doctors who will not help you, just state the test are fine and if one is off, they tell you not to worry about it and then you’ll be at the most dreaded appointment of all……..the Neurologist…….. and that neurologist will make sure you are not on any drugs or an alcoholic and your test will come back normal but you do it to prove to him that his suspicions are wrong and now you hope he will finally take you seriously and you pray he will help you finally after so many doctors who blew you off, then……..he will send you to see a………. Psychiatrist………. But I do want to say this…….doctors and nurses are not being taught this in school. However, for nurses you have to take so many CEU’s every 2 years, in Florida anyways, to renew your nursing license, without it you can’t work legally. Doctors have their own system too I believe. This would be a great place to start to educate the doctors and nurses so they all know it is real and they can make it mandatory. So, the goal is to bring it the State Boards attention and hopefully their are no lobbyist paying them off (CFS is a big business along with Fibromyalgia) and they may actually do something to start the true awareness of this syndrome. Then funding for a cure may start to be increased to find a cure. Personally, I think it’s due to a weaken immune system, adrenal insufficiency, possible a MTHFR gene mutation and that combination can not fight off all the TOXINS we are exposed too. Toxins, mutate genes and cause allot of chronic illnesses and autoimmune diseases too not to mention cancer too. We have a healthcare system in America that needs allot of improvement/ We want to be #1 in being the most Powerful nation, Wealthiest Nation……………wouldn’t it be nice if we strived to have the Best Healthcare System in the World………………and I’m talking for all citizens to be treated equally.
I so appreciate your positive approach.
thanks again
I agree that these are some good articles.
Miriam Tucker’s reporting in Medscape has been a real breakthrough. Thanks very much to her for that.
But getting through to the government apparently is something totally different.
For instance, here is her excellent coverage of the issues with the recent “Fear of Exercise” study from the UK.
http://www.medscape.com/viewarticle/838452#vp_1
And here is how the government is presenting that same study to the public – as if it’s just plain fact.
http://healthfinder.gov/News/Article.aspx?id=695460
We’ve got a long way to go before we reach any kind of finish line, I’m afraid.
Thanks for sharing Miriam’s excellent Medscape overview article with your audience, Cort.
We’re moving in the right direction but yes, we have a long way to go. On the other hand, progress I believe is inevitable!
I do…I feel the more research is done the better for us….
It astounds me that there’s still discussion about whether or not CFS/ME is real! I’ve had it for over 25 years but have been lucky enough to have found doctors who diagnosed it and have helped me manage it well. We need to continue to fund research and educate both the public and the medical profession so that all those suffering can get help.
Hello Cort
Thanks for your informative blog.
How would I find a health practitioner to help in Brisbane Australia ?
Hi Janet, a doctor review section will be opening shortly on Health Rising. Hopefully that will help you find someone.