My reference to encephalopathy was in the sense of 'if it had been used' by WHO instead of encephalomyelitis i.e. that back in the Lancet article of 19556 the author had proposed encephalopathy instead. My preference has ever been for a less restrictive name, like Parkinson's, so Ramsay's or something. I think a large part of the problem has been that the name is too restrictive. It guessed that inflammation played a key role without evidence to support it either then or since. I wasn't referring to the attempt by some charities to reach a compromise with authorities who were not willing to accept that the term was relevant or applicable - I was suggesting that if WHO changed its terminology or introduced a new one, then why not use one that is more applicable.
On a forum that's intended to support patients, would you be willing to reconsider your suggestion that patients may fake their diagnosis?
I am sure you know what I meant Ember. PEM can be said to occur without any evidence that it does. As we've spoken of previously PEM happens in other conditions too - it isn't unique. And people with a(nother) fatigue inducing/limiting condition will feel exhausted and worse after exertion as will others with any number of diseases. Whether or not they will feel as incapacitated as we do, and what qualifying level ought be considered, can only be determined by some form of objective test.
The same can be said of all the other qualifying symptoms too. Hence the great push - in part - for better understanding and objective testing. Admittedly, it is very hard I would imagine to claim PEM when none exists - but if PEM is a key need to be given a diagnosis you genuinely think applies or PEM does hit you but just hasn't for a while because, for example, you are living inside of your abilities, what then?
All of the above can apply of course to what we have now. Anything - in the absence of testing - will depend to a great extent on the ability and time a diagnosing physician has to listen and prompt a patient for their history. A referral to a specialist once a diagnosis is suspected - who will endeavour to do the same whilst ensuring a criteria is met.
We are talking about the need (or lack thereof) to introduce further criteria and attempt to separate/distinguish a distinct entity, now, without testing and with knowledge in this area having yet to determine the role of inflammation or it's significance (or lack thereof).
If for example, the Candadian Criteria were introduced little has been said what would happen to those currently diagnosed who did not meet the criteria, but we know that applying this criteria would restrict the patient base and better ensure more 'accurate' diagnoses for new patients.
In the UK the situation as I understand (remember it) was that Encephalomyelitis was not to be used at all. The preference was CFS. It was the distinct absence of inflammation of the brain and spinal cord as a proved key component of the disease in the patient populace that was in large part responsible for this stance.
In the end a compromise was reached because the name was historically attached to the patients who were diagnosed even if this piece of proof was absent from any research trial/study. Doctors were not happy using the term either and a further compromise was reached to use encephalopathy, that was at the level where they eventually produced the NICE Guidelines.
Now a further compromise if you like has taken place, in that Encephalomyelitis/Encephalopathy/Chronic Fatigue Syndrome are all used to mean the same thing. This stance has I believe recently been adopted by NIH, and ME/CFS or CFS/ME signifies this.
Maybe in America they can do what we could not in the UK. And in the meantime research will reveal some means of better quantifying what are now seen as the key components of this condition.
We now have the CCC CFS/ME, the International ME, and the IA CFS/ME Primer soon to be followed by the International ME Primer - representing the main thrust of attempts to better refine the condition(s). There are overlaps and confusion and not one has been adopted or endorsed by NIH or CDC.
I think the distinctions between ME and CFS are not enough to prevent easy diagnosis or to for example, prevent patients from qualifying for ME when in relapse and CFS when in remission, or at points in between when a reassessment might be necessary.
And we might be talking cross-purposes anyway. There is perhaps a greater need for distinction at the research level than there is clinically. Only epidemiological study will help reveal this but at this moment in time there are no unique treatments proposed for ME than are not being applied to CFS.
Advances are being made in research without a separate research definition for ME or clinical definition either. If for example PEM were made necessary instead of optional (assuming of course it is applied in that manner) then I would be interested to see if it makes any significant difference.