• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

The Hidden Battle For The Rights Of Chronic Fatigue Syndrome Sufferers

Tom Kindlon

Senior Member
Messages
1,734
Naomi Chainee’s covering note from Facebook with this very good article of hers

I wrote another thing!

“Those who don’t recover (and recovery is less than likely) are left with the implication that their ongoing illness is self-inflicted. This institutionalized victim-blaming runs contrary to the science, and it has left the ME/CFS community of sufferers, advocates, and support organizations very, very angry.”

(Yes, they Americanised the language.)

Particular thanks to Tom Kindlon-pwme for answering a lot of questions I had in regard to this. Tom is an amazing patient activist who has been critical of PACE for a long time. He’s certainly been an inspiration to me.

https://www.facebook.com/naomi.chainey/posts/10153651902342406

Naomi is a better writer than me. Not sure how much credit I should get. Also a few people gave input on my responses to her so thanks to them.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Naomi Chainee’s covering note from Facebook with this very good article of hers

“Those who don’t recover (and recovery is less than likely) are left with the implication that their ongoing illness is self-inflicted. This institutionalized victim-blaming runs contrary to the science, and it has left the ME/CFS community of sufferers, advocates, and support organizations very, very angry.”

Victim-blaming perfectly exemplified in the puff piece put out by Essex CFS Service and just discussed elsewhere:

"Always believe that recovery is possible," Jo proclaims. "But you have to stop putting the responsibility of getting better on somebody else and having the expectation that somebody else is going to 'fix' you. You've got the power to do it and you just have to start one small step at a time."

Thread: http://forums.phoenixrising.me/inde...e-self-promotion-for-me-awareness-week.44606/
 
Messages
13,774
I thought it did a good job of tying a lot of different issues into one narrative.

One problem - I don't think that this is Sharpe saying that CFS patients are undeserving of care:

For instance, here’s Professor Michael Sharpe in 1999, calling CFS sufferers “undeserving” of care:

“Those who cannot be fitted into a scheme of objective bodily illness, yet refuse to be placed into and accept the stigma of mental illness, remain the undeserving sick of our society and our health service.”

It's difficult to illustrate the problems with the approach taken by Sharpe/Wessely/etc concisely.
 

A.B.

Senior Member
Messages
3,780
I thought it did a good job of tying a lot of different issues into one narrative.

One problem - I don't think that this is Sharpe saying that CFS patients are undeserving of care:

Sharpe defended himself saying that this was a quote from a book. But the reference is so obscure and the wording has changed that it's hard to avoid the conclusion that Sharpe wants to say something while escaping responsibility for it.

See http://fumblings.com/weblog/archives/2005/11/a_response_to_m.html
 
Last edited:
Messages
13,774
Sharpe defend himself saying that this was a quote from a book. But the reference is so obscure and the wording has changed that it's hard to avoid the conclusion that Sharpe wants to say something while escaping responsibility for it.

See http://fumblings.com/weblog/archives/2005/11/a_response_to_m.html

In the context of the talk he was giving, I don't think your reading is right. He's built his career on 'caring' for patients with CFS! I did think that was a good blog though.

edit: Also, the term 'undeserving poor' is pretty commonplace (at least in the UK), and is normally taken as a criticism of attempts to use problems with the way some of those in poverty may behave as a reason to not attempt to assist them. This is complicated by the way that many people now use the term when they themselves are putting forth reasons why those in poverty are less deserving of help than might be assumed... almost as a way of shielding themselves from the criticism. I think it's a complicated one, but that this quote is not a great one to use in isolation.
 
Last edited:

Chrisb

Senior Member
Messages
1,051
It is not just the "undeserving sick" comment. There is also "...yet refuse to be placed into and accept the stigma of mental illness".

One would not normally say of someone, without qualification of the remark, that they "refuse" to do something if it is believed that they have just cause or excuse for doing so. Refusal suggests the defiance of proper (or, indeed, improper) authority.

It may merely be that the language used is infelicitous and that the words were not intended to bear the interpretation given them by some. One would, however, be excused for thinking that if only patients would accept the "stigma of mental illness" they could receive the treatment deemed appropriate.
 

A.B.

Senior Member
Messages
3,780
It may merely be that the language used is infelicitous and that the words were not intended to bear the interpretation given them by some.

He also said

“Purchasers and Health Care providers with hard pressed budgets are understandably reluctant to spend money on patients who are not going to die and for whom there is controversy about the ‘reality’ of their condition (and who) are in this sense undeserving of treatment.”

You know, one can say a lot of things without outright saying them. Here's another Sharpe quote:

“It’s wrong to say people don’t want to get better, but they get locked into a pattern and their life constricts around what they can do,"

Of course anyone can make up their own mind about Sharpe, whether he is just really clumsy with words or tortures language in an attempt to subtly express his disdain for patients.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
it's sly doublespeak on the part of Sharpe, Wessely etc
study them, listen to them
Almost always they put in a "get out of jail free" excuse/clause in what they say, knowing they need such as one day they know it's going to blow up in their faces and they'll need to say "but we were misunderstood! Read what I said back then, see?"

always sly digs at patients, condescension, arrogance, and setting up ways to avoid blame.
classic pattern of narcissistic sociopaths!