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Advisors to the government on ME (commonly referred to as CFS) should be ME experts, not psychiatri

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
Petition in the uk.

Currently, the government allows psychiatrists to give the majority of advice for the physical illness, Myalgic Encephalomyelitis, often referred to as Chronic Fatigue Syndrome.
There are more than 5000 research papers showing ME to be physical, not psychological. Advice on ME needs to be given by experts specialising in areas of the disease pathology, such as neurology and immunology. It should not be advised upon by psychiatrists, psychologists, or anyone working in an unrelated area
We, the undersigned, believe that the current level of psychiatric involvement in policy for a physical disease is unethical. We demand that the government receive proper advice on dealing with ME, from thoroughly trained professionals who have a strong history of biological research into it. In particular, we demand that Simon Wessely and Peter White, both of whom in the past have influenced policy to the detriment of patients, to be excluded from any further governmental involvement with the disease.

http://epetitions.direct.gov.uk/petitions/37117
 

Enid

Senior Member
Messages
3,309
Location
UK
All done - thanks peggy-sue. Oh dear, just how long do we have to go on educating the government that ME/CFS is for specialists - Virologists, Immunologists and now Cancer medics amongst others revealing the pathologies and finding treatments. What on earth does psychiatry have to do with these specialised areas in medicine, what do they know being blind to research findings over decades in the UK in order to mislead it seems.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
If any of you do Facebook, please, pass it on!
I know loads and loads of petitions get started about this - but this is one of the best worded and most relevant one I've seen so far!:)
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Thanks Peggy - Sue, i have signed, but i'm not overly happy with naming specific psychiatrists and researchers, the wording would have been better with the names left out i feel.
Lets hope it gets the 100,000 it needs to be looked at.
Has everyone here signed Pat Onions petition on disability benefits? there's a thread somewhere around here...

Take care, Justy x
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
Oh yes, ages ago!
I think I'd rather they had named Sharpe and Chalder too..... difficult one, Justy. There are so many of them!
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Yes there are so many! i just think it looks a bit like scapegoating - its a wider issue than just a couple of psychs. But i will still promote the petition and hope it gets many signatures.
Justy x
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
Thanks!
I do feel just ONE well-worded petition supported by everybody would do a whole load more good than thousands of petitions supported by a few hundred folk......
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
I often wish that wasn't a joke, Alex!
I've just tried saying I'm not british on it, and it won't let me sign.
 

Enid

Senior Member
Messages
3,309
Location
UK
I quite agree peggy-sue - if only these like petitions could agree wording and come together.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Gordon the Gopher knows more about ME than those bozos!
GORDON FOR EL PRESIDENTE! :alien:

Gordon_The_Gopher_431x300.jpg
 

Calathea

Senior Member
Messages
1,261
I saw this on FB a while ago, it's a good petition. I think it needs a solid campaign behind it, though. The UK govenment only looks at these petitions if they get more than 100,000 signatures, and that means a solid campaign such as the Equal Marriage one. I'm not up to orchestrating this myself, alas. Is there anyone who is? You don't need to be in the UK to help out for this, and it would make a lot more difference than merely adding a single signature.
 
Messages
3
Location
Scotland
You now only need 10,000 signatures for an "official response" - which isn't nearly the same obviously, but means someone at least has had a look at it.

However yes, this would benefit greatly from some sustained campaign.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Doesn't look like it has much support - only got just over a 1000 signatures, oh dear.
 
Messages
3
Location
Scotland
Yeah, it'd be on track for the 10,000 with that - but I don't have any ideas on what to do for more signatures. Way too ill to manage anything right now, and I'm guessing most people interested are the same! Sucks, huh? Well, there's 10 months still, so maybe things will change, maybe not...

Sadly I think Pat's Petition is only just over 50k, so still stuck at half way to 100,000, and almost closed. It will at least get the official response. Why do people love badgers more than us? ;)
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I wouldnt sign this if I was in england as those psychs do help some who are diagnosed using poor CFS definations and dont in fact have ME. ME and CFS shouldnt be mixed as very likely different approaches help different groups of patients. This has been seen in the way that "some" CFS patients (not ME patients) have their symptoms helped by the psych approaches.

No way of approaching this illness is going to work until things stopped being mixed together. If one brings in ME expert recommendation..then what about all those patients who dont have ME but have had their illness labeled ME/CFS and who just need CBT and psych drugs for depression. They will just then find themselves in the same boat as the actual ME patients are now in.

Simon Wessely and Peter White .. are just individuals thou powerful ones at that. It isnt them which is the big issue (wessley has caused more issues by all the bad research he's done) but the governments using of advisors which hold a biased ME/CFS view. Getting them out of the picture and just having another with the same kind of views put in in their place, wont help the situation any.

Naming names makes it sound like a personal vendetta against certain people rather then what its truely about.. which is getting those holding unbalanced, one sided views away from being gov advisors
 
Messages
445
Location
Georgia
Rule number one: Get attention for your illness, or you will be forgetten, left to rot. The psychiatrists would let you rot.

Naming names is not "nice". But then again doing so does add a certain immediacy and sense of urgency to your petition. I think the time for being nice passed about thirty years ago. If it weren't for loud and obnoxious activism the gays would still be dying from some unknown illness. You are competing in a din of public demands and concerns on your government. Be heard or perish! Be pugnacious, honest, and loud !