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.
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.
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).
“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.
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.
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.
Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.