Petition, change.org: Define "Melvin Ramsay's Myalgic Encephalomyelitis (M.E.)" as own distinct disease from CFS

I realise this may be controversial but it goes into it quite deeply, maybe too deeply.

https://www.change.org/p/dr-paul-ch...myelitis-m-e-as-own-distinct-disease-from-cfs

 

Did Ramsay ever say that ME was caused by enteroviruses and only by enteroviruses? And would it only be people with confirmed enterovirus infection who could be deemed to have ME? This looks more like Hyde's version of ME than Ramsay's.

 

The petition references this page as describing a recent ME outbreak in Spain: https://wwwnc.cdc.gov/eid/article/25/1/18-1089_article

It says

I then went to see how well the illness experienced by these patients matched with what is generally known about ME.

It sounds like these patients were seriously ill but improved fairly rapidly, except for 2 which had significant sequelae. Few details are given but it doesn't mention that these patients continued to have a chronic relapsing illness with marked fatiguability which is how Ramsay ME could be summarized. This doesn't really support the petition in my opinion, mainly due to lack of detail.

 

I politely won't be signing that. IMHO, there is no proof that 'ME is not CFS', other that the tautological approach of saying there is some kind of 'true ME' and defining CFS as 'people diagnosed with ME/CFS who don't have ME'.

If we (rightly) criticise the scientific approach, methods and definitions used by those with a biopsychosocial theory for ME/CFS, we should hold ourselves to the same standard.

(I'll add that if you wanted to portray ME/CFS patients as slightly unhinged with an axe to grind... well, you wouldn't go far wrong with that petition. As so often in this space, it's well-meaning but an own goal)

 

This explains my position far more eloquently than I could.

 

Not sure I agree with the central point, and there's some quackery in there. It feels a bit mean to say this about another patients work, but this is the sort of petition we could do without imo.

 

Perfectly put.

 

I'm sorry, even if I did agree with the main point, there is just to much other stuff not related to disease descriptions to sign this. It feels more like a blog with several posts than a petition?

 

Ditto.

 

I agree. We have debated all this at length. I have learned that Ramsay's wisdom lay in understanding an illness that has no specific connection to encephalomyelitis or enteroviruses.

I think this petition hinders the effort to get a clear view of ME. And sadly it fuels the claims of people like Wessely that patients have irrational beliefs. Those irrational beliefs tend to come from physicians with pet theories, and yes physicians probably have more crazy beliefs than patients, but it does not help to pick up on these beliefs when they don't add up.

 

the guy who put this together has been quite active on social media recently. he's sort of jumped in, all guns blazing - can post about mold, brain injury, ME, enteroviruses within a few minutes of each other. without being disrespective, he's getting a bit carried away. we could do without this.

i mean regardless of the motive and content of the petition, the fact it makes no proper reference to disease classification etc. and is simply addressed to NICE officials tells you all you need to know.

 

I've read some of the comments of people who signed.
I really doubt they have read all the stuff the petitioner has posted and are largely signing because they don't like the fact that ME gets 'clubbed in' with 'chronic fatigue'; unfortunately that is not what the petition is about (as far as I can tell but I haven't read it all and don't intend to).

 

I’m giving this a miss for the reasons already stated.

 

In the ME world bickering about labels has always turned divisive and acrimonious very quickly, which is something we could really do without.