UK Labour leadership candidate's views on ME

[Countrygirl]

Know thy enemy?

The following article is an old one, but it was written by Yvette Copper, Labour leadership candidate, who claims she had ME and recovered. While it is always good news to hear that someone recovered from this miserable illness, if that is what she had and not the more common version of post viral syndrome, she is spreading false and very unhelpful impressions of the disease. Certainly her quote that Dr Weir claimed that about 90% of patients recovered was publicly corrected by him. I have the impression that she has little knowledge or understanding of how very severe the illness is for high percentage of people and such misinformation , especially from a person in her influential position, is potentially deeply damaging to the patient community.




http://www.independent.co.uk/incoming/tired-of-all-this-miserable-me-stuff-1355561.html

Aaargh. Not another moaning article about ME. The Royal College of Physicians, Psychiatrists and General Practitioners produced a report this week about chronic fatigue syndrome (unhelpfully called ME or yuppie flu) showing that 1-2.5 per cent of the population are affected by it. And, as always, a report on chronic fatigue syndrome (CFS) acts as cue for another round of depressing arguments in the papers and on TV.
If it isn't some cynic sneering at "yuppie" malingerers, it's the dismal story of a sufferer condemned to year after dreary year of inactivity. But don't worry. I promise the next 1,000 words will be a drone-free zone.

Desperate to leave all the limpness, and the fuzzy-headedness far behind and get on with our lives we never mention CFS again. After all, people will think we are bonkers, unstable, susceptible to relapse - or just deeply boring. The result is that the cynics and the chronics hog the airways.

So it's time to correct the balance. I was sent to see a specialist in chronic fatigue syndrome, Dr William Weir, a consultant physician at the Royal Free and Coppett's Wood Hospital in north London. According to Dr Weir, 80-90 per cent of people who get chronic fatigue syndrome recover within two years. Even those who remain ill for a long time still have a chance of making a full recovery. As Dr Weir points out, "I've seen people who've recovered after 10, 15 or even in one case 17 years."

Faced with a sceptical public, and a media caricature of the illness as yuppie 'flu, the reaction from ME support groups is perhaps understandable. To convince us the illness is real and awful they provide us with gloomy case studies of people confined to their houses for years. Dealing predominantly with those who have not recovered, they tell us the prognosis for CFS is terrible. And they bemoan the lack of sympathy they receive from the medical profession and the outside world.

Unfortunately such gloom-mongering is counter-productive. A potentially sympathetic audience is turned off by the portrayal of CFS sufferers as victims. What starts as pity for their terrible plight turns quickly to contempt and boredom.

More important, sufferers are made to feel even worse by the overwhelming impression that they have no hope of recovering. The most dispiriting thing I did when I first fell ill was open a self-help book on ME. Within three pages, I was convinced my illness would last forever. Luckily, I had doctors and family who treated CFS as an ordinary, if unpleasant, illness, from which I would naturally recover

 

[TiredSam]

For someone who claims to disapprove of cynical sneering, she seems to be happy to sneer at absolutely everyone and everything - the "long-time persistent sufferers", the "it's all in the mind lobby", daytime television, trashy magazines, a "sceptical public", media caricatures, gloom-mongerers, a contemptuous and bored audience, dispiriting ME self-help books ...

She must have just wanted to write an article in which she looks down her nose at everything, and CFS was the vehicle she chose. It probably could have been about anything else. She finishes the article by saying how proud she is of herself.

Well at least she doesn't peddle the BPS model, which is something.

 

[Snow Leopard]

Back in 1996. But little has changed.

According to Dr Weir, 80-90 per cent of people who get chronic fatigue syndrome recover within two years. Even those who remain ill for a long time still have a chance of making a full recovery.

We now know that 80-90% of people fail to make a full recovery and still have lifelong symptoms, even if they have some improvement during the initial 2 years.

 

[alex3619]

If I recall correctly, what was misquoted is that of those who recover, 90% do so in the first year. Its about when recoveries happen, not how many recover.

 

[Scarecrow]

I'm no supporter of Yvette Cooper but I think that she is striving for balance in this article and she just about achieves it. Yes, some parts are wince worthy but many valid points made, too.

 

[Bob]

I heard Cooper being supportive of welfare benefits claimants recently, saying that she had needed them when she was ill with ME.

 

[Bob]

Here's a recent article...

Yvette Cooper reveals how her life shaped by a year off with ME - and an inspiring headmaster
18 July 2015
http://www.mirror.co.uk/news/uk-news/yvette-cooper-reveals-how-life-6094553

Labour leadership contender Yvette Cooper tells Sunday People political editor Nigel Nelson what shaped her life. And how a year off with ME changed her view of it

Extract:

Yet a year off work with Chronic Fatigue Syndrome or ME when she was 24 gave her a taste of how harsh life could be on benefits.

It also gave her something else - an understanding of what it is like to physically struggle to cope with even the most simple tasks.

She says: “I hated every minute of it. But I would walk along the street and realise just how many other people were struggling just to walk.

“And I would see how easy it was for other people just to walk on by.

“I’ve always believed in being responsible, in working hard.

“But there are times when you simply can’t, when things go wrong in your life. And you can’t work even when you’re desperate to.

“To talk about people being benefit scroungers or workshy shows no respect.

“Now I see people who may be seriously ill having their support cut by Chancellor George Osborne to get the deficit down and that’s deeply unfair. The most vulnerable get hardest hit.”

 

[Countrygirl]

Wow, Bob! That article presents a different tone. Can't think why.

 

[worldbackwards]

“I’ve always believed in being responsible, in working hard.

“But there are times when you simply can’t, when things go wrong in your life. And you can’t work even when you’re desperate to.

“To talk about people being benefit scroungers or workshy shows no respect.

“Now I see people who may be seriously ill having their support cut by Chancellor George Osborne to get the deficit down and that’s deeply unfair. The most vulnerable get hardest hit.”

I bet that's exactly what she was thinking when she was rubber stamping the WCA as Work and Pensions Secretary. Good old Yvette - she's always got the interests of the most vulnerable at heart. I'd rather see Andy sodding Burnham as Labour leader.

 

[Bob]

Know thy enemy?

I'm not sure.. I'm not convinced she's the 'enemy'. I could be wrong but i think she's trying to portray the illness from a different point of view, or a fresh perspective - the point of view of a 'normal'. i.e. I'm an ordinary person and I went down with this illness for 3 years, and it could happen to any 'ordinary' person reading this article. It's not imaginary, it's not a mental disorder, it's not depression, and it's not easy to live with, and some people get better. I don't think that's an unhelpful way to portray the illness or patients. Except for her stats, which seem to be pulled out of thin air. She also demonstrates that it's not an illness that just 'moany' chronically ill people get - because she's manage to get to the other side, to experience good health again, despite all the labels that people have tried to pin on her. And this might be a good way to get people to think about the illness with a fresh prospective. It's insensitive, but not necessarily unhelpful in terms of making people think about things differently. It sort of adds to the stigma but at the same time challenges the stigma. So it's a bit confused.

I don't think she quite pulls it off (i.e. what she's trying to achieve with the article) - and she is insensitive, but I'm not sure if it's an unhelpful article, overall. It might have made a few people think differently about it.

It would be interesting read something more recent that she's said about ME, before the election cycle kicked in.

But you'd already warned me that the article was bad, so I'd braced myself for the worst, and it was much less offensive then I'd expected. If I was reading it with no expectations, then I might have found it very offensive. I don't know what to make of it really. So perhaps best to ignore this post if I'm talking a loaf of waffle. Just conveying my first impressions.

 

[Wildcat]

.
1996, the year of Yvette Cooper's article in the Independent, I starved in my own home, living in subhuman conditions with very severe ME, and for most of 1997. My GP refused to refer me to social services for homecare.. My GP probably read that article. I was far far too sick to buy or read newspapers. I couldn't read at all. I couldn't even move 90% of the time.
And I have not recovered. It took 12 years to be able to type again.

Yvette Cooper didn't give a toss about severely sick sufferers barely alive because of illness and prejudice, so concerned was she to convince her bosses that she wouldn't relapse.

2010, as DWP minister, Yvette Cooper made the WCA even harsher. A person who was off work with sickness for 18 months, who claimed sickness benefits in that time, who later became DWP Minister.... then when in office as Minister, made it even more difficult for sick/disabled citizens to access the life saving sickness benefits which they are entitled to.

http://www.benefitsandwork.co.uk/news/members-only-news/1207-even-harsher-new-esa-medical-approved

She has not lifted one finger to help ME sufferers, never. But she has dined out on her 'triumph over tragedy' ME story for 20 years and grossly misinformed the press and public that 90% recover "and it never comes back"

. She is using ME to promote herself as someone who understands illness, purely for her own political advancement. She is a careerist.
.

 

[Wildcat]

.
List one thing that Yvette Cooper has done to help ME sufferers, and sick/disabled people in general in her entire political career.

She could have voted against the recent draconian Welfare bill.... But she didn't.

 

[Research 1st]

The fault here, is with the doctors not the misdiagnosed patients, clearly they are believing CF = ME and or the patient believes CF = ME themselves.

Think of the logical fallacy here of 'recovering' from ME or CFS with unheard of pace:

At it takes 6 months minimum to be diagnosed with CFS, and these people claim to be ill for just one year, this means they have chronic fatigue diagnosed for 1/2 year (6 months). That's 26 weeks.

Question: How do you recover from a chronic incurable disease with no proven treatment modality, within 26 weeks, if you legitimately have it?

Answer: You don't have ME or CFS but post viral fatigue/burnout, and are misdiagnosed.
Chronic means chronic, not just for two seasons.

There are other articles like this in the press. People even saying they have 'ME' a few times a year, LOL. Chronic means chronic. End of discussion.

 

[Wildcat]

.
http://www.meactionuk.org.uk/Yvette-Cooper-correction.htm
.

http://forums.phoenixrising.me/index.php?threads/clarification-from-dr-william-weir.7700/
.

 

[Countrygirl]

Thanks Wildcat. Here it is:

Clarification from Dr William Weir

Margaret Williams 7th December 2010

Dr William Weir, Consultant Physician of 10, Harley Street, London W1G 9PF (who specialises in ME/CFS) wishes to correct the statement made in an article in The Guardian on 4th December 2010 by the Shadow Foreign Secretary, Yvette Cooper MP.In an interview (“There’s nothing better than politics”), Yvette Cooper MP is quoted as saying about the time she suffered from ME: "... But my consultant did say that over 90% [of ME patients] made a full recovery, and it never came back. It's one of those things you hope people suffering from it now will realise..." (http://www.guardian.co.uk/politics/2010/dec/04/yvette-cooper-guardian-interview).

It is in the public domain that Yvette Cooper’s consultant was Dr William Weir, since Ms Cooper herself made this information public in an interview about her illness in the Daily Mail about ten years ago.

Dr Weir is concerned about this statement in two respects: (1) he did not give Ms Cooper such advice and (2) it is untrue that 90% of ME/CFS patients make a full recovery. Dr Weir points out that the statistic Ms Cooper is probably (mis)quoting is “Of those who recover, 90% tend to do so in the first year of the illness”, but in those who remain unwell after the first year, there is a lesser tendency towards recovery.

It should be said that at the All Party Parliamentary Group on ME (APPGME) meeting held on 21st October 2009 in Committee Room 21 at the House of Commons, Ms Cooper was made aware of the many problems faced by people with ME/CFS in relation to the Department for Work and Pensions, specifically the way in which a patient’s own GP and specialist were progressively being removed from the opinion-gathering process and replaced by doctors who know nothing of the patient’s medical background and even less about ME/CFS.

In response, she noted these concerns but did not indicate that there would be any shift in the DWP position (ME Association summary of APPGME meeting

 

[Wildcat]

Thanks Countrygirl. Am on a blinking tablet and can't work out how to copy and paste text on it. The tablet is a spacial hell. I still cant use a mobile due to multiprocessing disabilities. Perhaps Yvette could help me out as she is so recovered..
.

 

[SilverbladeTE]

She is an ASS
another "apparatchik", one of the "political class"
end of story

 

[Wildcat]

.
13 April 2010 .... Plans to make the ESA medical much harder to pass are approved by Secretary of State for Work and Pensions (DWP) YVETTE COOPER.

Even harsher new ESA medical approved

http://www.benefitsandwork.co.uk/news/members-only-news/1207-even-harsher-new-esa-medical-approved


An MP (Yvette Cooper) who is exploiting her experience of illness and time on sickness benefits (1994) to drum up support for herself as new Labour leader in 2015, claiming that she is an MP who 'understands' sickness and the experienc of being on sickness benefits ......

BUT Yvette Cooper herself Actively approved the horrendous, harsh and damaging changes to the Work Capability Assessment (ESA), making sickness benefits so much harder to get, when she was Labour DWP Minister in 2010.

... Yvette Cooper approved the changes in ESA assessment which have lead to extreme hardship, and loss of life of sick and disabled people in the UK.

IDS has taken the 'Kick the Sick' policy even further (to the extent that the UK benefits policy is being investigated by the UN as Human Rights Offenses against UK Disabled people).

But do not forget that the WCA and ESA were introduced by Labour ministers Peter Hain and James Purnell... And made much more harsh by Yvette Cooper when she was DWP minister in 2010.
.