What will be the threshold for calling ME/CFS a 'disease' and are we already across it?

[Starrynight]

I'm very sorry to hear that you have extra problems on top of your ME. But what we hear from a lot of people in that position is that their extra problems get dismissed because they already are seen as having a condition that's all in their heads, and so the extra stuff is probably all in their heads too.



My hope is for better treatment from society. I think it's a matter of degree. There are some people who will find an excuse to treat people badly (those prepared to see the sick as parasites); those who don't generally feel that way but who will look down on those whose illnesses are 'all in their heads'; and those who treat all people well with no distinction about cause. I think the latter group is fairly small and the middle group is fairly big. If we can move out of the 'it's all your heads' camp, at least will have two groups treating us well rather than just one.

Regardless of the wisdom of jumping on a thread late in the evening, in the cold light of day I stand by what I said.

Of course the psychogenic assumptions currently widespread aren't helpful. However I suspect that with an official "physical disease" diagnosis that implies a whole soup of symptoms (perhaps without a definitive test), risk of other serious conditions being overlooked would be as great or greater than present.

Your second paragraph talks about wanting better treatment from society. Are you suggesting that throwing the person with, PTSD say, under the metaphorical bus in order to toady up to the kind of bigots who thinks they should just pull themselves together and be more "resilient" is a valid way to do that? I disagree.

 

[Sasha]

Your second paragraph talks about wanting better treatment from society. Are you suggesting that throwing the person with, PTSD say, under the metaphorical bus in order to toady up to the kind of bigots who thinks they should just pull themselves together and be more "resilient" is a valid way to do that? I disagree.

No. I didn't say that or imply that, and it's not what I think.

 

[DigitalDrifter]

“Hysteria -> Neurasthenia -> Conversion disorders -> Functional Disorders”
and god know what other “memes” have been made up repackaging the same idea.

I'd say the concept of Depression replaced Neurasthenia and Somatoform Disorder replaced Conversion disorder which is now FND.

 

[Kitty]

Your second paragraph talks about wanting better treatment from society. Are you suggesting that throwing the person with, PTSD say, under the metaphorical bus in order to toady up to the kind of bigots who thinks they should just pull themselves together and be more "resilient" is a valid way to do that?

I find that an odd interpretation of a comment saying it would be helpful if people stopped misdiagnosing ME/CFS as psychogenic.

I'm puzzled it could be thought of as problematic. Why would ME/CFS being diagnosed accurately lead to other conditions not being diagnosed accurately? Why would the same person with two conditions be more at risk of one going undiagnosed if the other was? Accurate diagnosis is likely to lead to better separation of symptoms, not more lumping together of them.

I can't see a suggestion anywhere of sacrificing anyone, or even trying to elbow past them to grab the attention.

 

[Jonathan Edwards]

However I suspect that with an official "physical disease" diagnosis that implies a whole soup of symptoms (perhaps without a definitive test), risk of other serious conditions being overlooked would be as great or greater than present.

I don't expect things to pan out in that way. The identification of the MHC Class I link to seronegative spondarthritis in he 1970s allowed rheumatology to make sense of a group of illnesses that were not rheumatoid but seemed overlap. Clinical studies by Moll and Wright identified which signs and symptoms could correctly be attributed to this Class I associated process. If we get a biological basis for ME/CFS we can expect to be able to work out exactly which symptoms can be attributed to it - or at least as much as for more established disease concepts.

The problem at present as I see it is that people with ME/CFS are fed all sorts of stories about 'a whole soup of symptoms' they can expect to have with their illness, including those attributable to activation of mast cells and 'dysautonomia'. If we know what is going on we can get rid of that baggage. A definitive test is not needed - we don't have them for forms of arthritis. But we can gather evidence that justifies one treatment or another.

 

[Starrynight]

No. I didn't say that or imply that, and it's not what I think.

Good to know, thank you.
I apologise if my rather crude illustration of why I think wishing to avoid association with certain categories of disability is morally problematic was offensive to anyone. I do however think it is worth considering how what we say might be interpreted by those in the wider disability community. Finally I think the idea that much of society is better disposed towards those with conditions with clear physical cause is an over generalisation and perhaps even incorrect these days. But that's for another thread really.