The autonomic stuff is interesting (but logical). We know that Dysautonomia can lead to profound fatigue, and Dysautonomia is not ME specific but found in many other conditions.
My pet peeve is the reference to 'fatigue' remains when describing ME. Because of political correctness, it remains relentlessly promoted as being a core ME pathology sign. Yet it's silly in my view, and not sensible to keep repeating the word. The f-word (for ME) de-legitimizes the severity and the danger the ME patient may face when faced with a life-long dreadful disease. (E.g. Some with chronic severe ME end up with immune suppression and cancer, some even die). Thus, naturally, hearing your incurable disease reduced to 'fatigue' is not only insulting, it's potentially dangerous for some, as physicians may well get wrong idea about how ill the patient is, and they might feel is only 'tired' if they do too much - hence the word CFS is despised by most with ME, severe or otherwise.
The reality of living with ME, is not experiencing 'fatigue' (fatigue is tiredness or exhaustion), but a a specific
post exertional relapse reaction where the reaction can have profound affects on the:
cardiac/respiratory, central nervous system, immune response, hormones etc , specifically from minor mental or physical exertion. Naturally, as the MRC and NHS promote graded exercise to reduce symptoms (LOL), they're never going to admit this or state it, as it makes a mockery of the grant applications t
hey are funding and the public will ask questions what on earth is going on and why there is no basic treatment since 1969. Thus fatigue, becomes a stupid word, and out of date, backwards.
ME 'fatigue' (misnomer) actually produces a cellular exhaustion unlike any other condition I can think of, even MS. Thus as Alex timely and intelligently suggests, it's perhaps a bit odd to mix in ME 'fatigue' with
other 'fatiguing' conditions where the etiology is then
presumed (by the researchers) to be shared, on the basis ''they have fatigue too'', kind of scenario.
If you look back, part of the UK 'biomedical' funding was snatched from ME to Sjogren's syndrome, on that basis. Sadly for PWME, any 'evidence' would thus 'prove' that ME is not unique - what is actually needed to legitimize ME more, but is just an experience other people have. Clearly it's not, and if you talk to veteran ME friendly physicians, they also agree they've never seen anything like ME before either. (Important to note).
The British psychiatrists still hold a religious belief about 'Chronic fatigue' (F48.0) as a correct description for ME (G93.3), but recent research shows that ME is probably an accurate term, especially as Chronic Lyme or
novel variants or other non Borrelia co-pathogens look like they will explain many cases of ME (NB: Encephaloymeltiis can occur in neuro Lyme). So technically, you can have ME if you have neuroborreolosis.
So lets drop fatigue, and keep with at least severe or subsets of ME, being explained, by a chronic infectious state. I say this as...
The British and other government talking heads in Europe are still in denial and clinging onto the 'post infectious' theory resulting in 'Chronic Fatigue' (which they believe is ME), yet if you look at
the results of patients on this forum, many patients
who can access private labs, are actively infected with a whole host of infections (also found in AIDS), which demonstrates they become immune suppressed (over time) and thus, by logic, ME sufferers would carry
multiple active infections and never harbor a ''belief'' in a virus, or a ''hit and run'' event that has now gone away.
Most disappointingly, none of this biomedical CFS (fatigue) research money is testing people bedridden, for decades, with actual proven damage from relentless multi decade ME. (Hypothyroidism, Arthritis, Adult Growth Hormone Deficiency, Osteoporosis, Heart Failure, Cysts/Tumors, Endocrine disorders, Neurological disorders, Immune suppression). Instead, for decades we have had researchers test people with 'Chronic Fatigue', and we have a mixed bag of results. I wonder why?!
Even if they test housebound people who are 'severe'. Severe means nothing in medicine without evidence. These sickest of the sick people, historically, are filtered out of research studies,
because they exceed the criteria for CFS.....which means ME, is never studied!!!!!
It is, what it is, and this is why in 2015, beliefs like below remain:
''In conclusion I hope you agree that CFS/ME is a chronic disabling disease with genetic backgrounds triggered by infection with a link to psychosocial stressors''.
Source:
http://www.gresham.ac.uk/lectures-and-events/standing-up-for-fatigue
All this is saying is people with a genetic defect, who get stressed or are 'influenced' into their beliefs, who catch an undisclosed bug, get CFS/ME due to a perfect storm. Clearly, that is just reductionist and although maybe accurate to believe in the 1990's is now scientifically inaccurate. More worryingly for the future, it is what the British Psychiatrists have been saying since day one.
