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MEA website poll on what to call this illness

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15,786
How important is it to settle on a name for an illness before it is even known what it is and what causes it? Is it uniquely important in the case of ME/CFS?
What the disease is not called can be even more important than what it is called. I'm strongly opposed to any name which inappropriately elevates the role that fatigue plays.
 

RustyJ

Contaminated Cell Line 'RustyJ'
Messages
1,200
Location
Mackay, Aust
Most UK doctors are either reluctant or unwilling to use the term ME

This is because they believe that encephalomyelitis is pathologically incorrect - so they use a term (CFS) that their patients do not like or accept

From my understanding there are a number of inconsistencies here. The evidence is inconsistant - some autopsies have determined encephalomyelitis. Unless the vagaries of cohort selection and the number of autopsies is large enough to rule this out, I would think this is a very slippery statement. Besides, citing research which has not been published is a little unscientific, to say the least.

I could be wrong, but I thought part of the initial submission for the biobank and autopsy program referenced the findings of encephalomyelitis in previous autopsies.

Of course, the flip side of the statement is that unless you can point to a good study that surveys doctors' responses and knowledge about this illness, I would regard this as heresay, and since it comes from someone in authority, then it is dangerous heresay.

If the experts are still out on whether the illness is encephalomyelitis, because there is no real evidence either way, then how would the average doctor know this? The average doctor knows very little about the illness. Staggeringly little.

What doctor talks about light and sound sensitivities, minimization of stressors, OI to their patient?

Other reasons would then have to be asked about why doctors persist in calling the illness 'fatigue', when there is real evidence of immunological and endocrinal aberrations, even, if as you prefer, there is encephalopathy, especially when they know patients do not like the term.

There is an inherent injustice in how doctors approach this issue, and some 'fatigue' advocates. What is the greater wrong here? Is it okay for doctors to demean and ignore the majority of patient symptoms, because they believe it is only fatigue, yet wrong to treat the illness more seriously and perhaps commit the lesser wrong by calling it encephalopathy.
 
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Min

Guest
Messages
1,387
Location
UK
It is difficult as there appear to be a large number of different conditions confused under the CFS umbrella term. I would call severe M.E. 'living death'.