Surely the separation of ME from CFS is not too much to ask for ?
Surely it is time for a biomedical pathway, serious investigation, biomedical treatment biomedical respect and proper research ?
People with Severe and Very Severe ME should not have the nothing that they get, should have to not live in fear of misinterpretation and mistreatment, at continuous risk of serious harm by ignorance, whether genuine or deliberate.
Surely that is not too much to ask?
It is not going to happen, though, until ME is separated from CFS.
Although they are used synonymously "ME" and "CFS" are not equivalent terms. Myalgic Encephalomyeltis is a neurological disease, Chronic Fatigue Syndrome is a made-up term that encompasses a wide range of fatigue conditions.
Currently some people use the term synonymously to mean ME and CFS are both mental health conditions, some interpret it as neurological; doctors and health and social service practitioners can chose which interpretation they use. This is unacceptable and dangerous for all.
ME does not exist on a continuum with Chronic Fatigue or CFS any more than Cancer , or Multiple Sclerosis does.
ME is not a fatigue illness , in the way it is contextualised in CFS; you don't even have to have fatigue to have ME.
ME is identified by its unique post exertional autoimmune response and post
exertional fatigue, which is quite different from ordinary fatigue - particularly the way it responds
deleteriously to exercise.
A service cannot safely identify and treat ME patients under a CFS definition without doing a gross disservice to taxonomic logic; the criteria for ME are very specific,whereas the criteria for CFS are far too vague, undefined, unreliable , too broad to be of any practical value.
CFS ignores the hallmark symptom of ME- the post -exertional impact of any activity as well as the complex, serious neurological endocrine, cardiac and autonomic body dysfunction, putting people's health and lives at great risk.
The techniques used in the therapeutic treatment of Chronic Fatigue are potentially dangerous -even life-threatening to someone with ME.
The imposition of the "CFS" label upon their disease, is precisely the reason why people with ME are so deprived of proper medical tests, treatments and research .
The use of "CFS" in conjunction with ME is cruel and unacceptable, it wrecks lives , it leaves numerous patients suffering for decades with no hope of a cure or treatment, and it results in countless daily cases of psychosocial abuse and needless suffering.
There is no reasonable logic to this neglect of ME patients.
Well said Greg.
ReplyDeleteHowever I'll go one step further. The name CFS serves NO patients appropriately!
My personal view is that Chronic Fatigue Syndrome as a name should be abandoned. If you take the ME patients out of CFS what are we left with?
I think we are left with a cohort of people who have been abandoned.
People who probably have other treatable problems - eg thyroid, depression, vitamin deficiencies, or perhaps even those who are so thumb-screwed by the system that they are left without options and have become weary of the fight.
CFS is not a good wastebasket to throw these people into either. These people also need real diagnoses and real help.
Chucking everyone into one diagnositc dustbin and telling them to exercise and talk themselves well again is lazy medicine.
"Abandon CFS!" would be my message!
Excellent point very well made Sally !! IF ONLY everyone would grasp the GREAT disservice done to everyone right across the board by "CFS" : a useless label, not only in terms of the damage being done to people with ME but also in terms of denying proper investigation and possible treatment to people who have some other undiagnosed disease- as you describe.
ReplyDeleteVery good point about being thumb-screwed and weary of the fight . It's hard, sometimes.
Thanks so much Sally.
I agree with every sentence of this Greg - you've put it so clearly and succinctly. Everyone with M.E should read this piece.
ReplyDeleteWhen more and more M.E sufferers realise they are being conned by the lie that 'ME is the same as CFS' we will reach a tipping point - and as your commentator above says, abandon "CFS". Then we can focus on curing M.E!
Best regards from @CFSisnotME
OK i get now why you asked me on twitter about the difference between the two. And although i do agree with argument for necessity of separating two conditions, for me it boils down to what causes it? How do we fix it?
ReplyDeleteIt is immune system disorder that affects our nervous system. Impaired immune system affects many other systems in your body (the way you outlined yourself) by making them more exposed to damaging environment. It could be your cardiovascular system, it could be your digestive system, it could be your musculoskeletal system. In my opinion CFS would apply more to musculoskeletal system disorder, but underlying cause is still one and the same. It is auto-immune system disorder. Here's my argument, although they most definitely are different things, and should be separated by medical establishment, the source of it is damaged and confused immune system.
Medical establishment understands very little about our immune system and even less about it's malfunctioning.
Couldn't fit it all in 140 characters on twitter ;) i hope my point of view makes sense to you, and thank you very much for making me to overthink this ME and CFS relationship.
Edvis