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Daily Telegraph article (should be in Monday August 29 edition)

Dolphin

Senior Member
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17,567
This article briefly appeared on the Daily Telegraph website on August 26. (Dr.) Max Pemberton said that was an error and it will be in on Monday.
It has been posted elsewhere so I thought I'd post it here.

Protesters have got it all wrong on ME

By Max Pemberton

7:30AM BST 27 Aug 2011

That people feel threatened by the idea that ME has a psychological component says a lot about the stigma of mental illness.

It might seem strange that a group of doctors would be subjected to harassment, bullying and death threats for attempting to help people. Even more baffling if the death threats should come from the very people they were trying to help.

Yet earlier this month, Prof Simon Wessely, a doctor and pioneering researcher into ME (myalgic encephalomyelitis), disclosed that he and other scientists working on the condition had received death threats from a small group of protesters who have ME. In addition, the protesters have made complaints to the General Medical Council, universities and ethics committees all of which have been proved to be baseless in an attempt to disrupt further work.

The reason for their behaviour is that research is focusing on the psychological basis of the condition; as a result of the findings, ME is now considered to have a significant psychiatric component. While the protesters represent only a tiny fraction of those with ME, it is true to say that many others feel strongly about the suggestion that it has any basis in psychology at all.

Symptoms of ME include extreme fatigue and muscle pain. Sufferers are often bed-bound or have to use wheelchairs. Many claim that their condition is the result of a viral infection or exposure to environmental toxins. Research to date has failed to support conclusively this hypothesis, much to the chagrin of sufferers who feel frustrated and angry that doctors remain sceptical that this is the actual cause.

The ME Association, while condemning the death threats, said that sufferers have a justifiable complaint, as almost no ongoing government-funded research is looking into the bio-medical basis of the disease. This is disingenuous. Firstly, research is being carried out into the viral aspect, with the Medical Research Council backing a recent study into precisely this.

In addition, years of research have already been undertaken, and has produced underwhelming, inconclusive results to support a bio-medical cause. It wasn't until psychiatrists such as Prof Wessely started treating the condition as a mental illness that real progress was made.

The current gold standard for treatment is a combination of supervised exercise and talking therapies. A major British trial published in The Lancet found that at least one in three patients with ME recovered using this approach. The biggest hurdle faced by doctors is persuading people to actually attend and engage with treatment. They resist because they refuse to be seen as mentally unwell. It does seem bizarre that those with such a debilitating disease would refuse treatment because it was given by a psychiatrist.

Most people are more than happy to be seen by any specialist. If you have a painful knee, for example, you might be seen by a rheumatologist and an orthopaedic surgeon. If the condition was seen as involving one more than the other, that would never be considered evidence that no one was taking you seriously, or that your welfare was undermined. Microbiologists and immunologists have been unable to help ME patients, and so psychiatrists have become involved. But that is considered outrageous. People refuse to go to outpatient appointments and refuse treatment, despite evidence that it works. Accusations are thrown around that the medical profession is not taking them seriously. But just because doctors frame a condition in terms the sufferer does not like does not mean doctors are not taking it seriously. That people feel threatened by the idea that ME has a psychological component says a lot about the stigma of mental illness.

It's an attitude that dogs the lives of many people living with mental health problems. Yet, for me, a psychological explanation is a very real one. It doesn't mean someone is faking it; it doesn't mean the illness doesn't exist. It also doesn't mean that people should be able simply to pull their socks up and get better, or that it's under conscious control. However, it is testament to the complexity of the brain that the mind is capable of such stark physical symptoms. As a model for understanding a condition, it's as valid as any other.
 

Dolphin

Senior Member
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17,567
Daily Telegraph (UK) letter lengths August 26

I thought I'd post this early as it will be important to get letters in quickly on Monday or Tuesday as my "research" shows.

--------------
(from http://www.telegraph.co.uk/comment/letters/ )
Your letters to the Daily Telegraph, Sunday Telegraph and Telegraph.co.uk. Letters should be sent to dtletters@telegraph.co.uk (dtletters @
telegraph.co.uk) (Daily Telegraph) or stletters@telegraph.co.uk (Sunday Telegraph). Please include name, address, and work and home telephone numbers.

[Dolphin: Sunday Telegraph bit isn't relevant but thought I'd give full quote]

---------------
This does not include the bit in brackets e.g. (Letters, August 24), (Comment, August 25), etc. which might only be in one letter if more than one letter is published on a subject:

Length of individual letters in Friday's paper: 23, 24, 31, 35, 35, 47, 50, 51, 52, 53, 66, 76, 114, 118, 127, 137, 145, 169, 179 and 182.

Summary: 19 letters ranging from 23-182 words.

Median length: 66 words

11 letters under 100 words,

8 letters 100-199 words,

0 letters 200+ words

Letters on August 23 paper: 1

Letters on August 24 paper: 8

Letters on August 25 paper: 9

Letters on August 26 paper: 1 (Im bit confused by this one)

Anyway, presuming the article is in Mondays Telegraph, they are most likely to publish letters on Tuesday and/or Wednesday (it seems) i.e.
well need to get in pretty quick.
 

Angela Kennedy

Senior Member
Messages
1,026
Location
Essex, UK
While getting letters in is one thing which people should do if they think appropriate and can - prompt submission of good quality responses in the comments section is extremely important - bearing in mind the watering down and limiting of published responses we've seen just today in the Observer.
 

Dolphin

Senior Member
Messages
17,567
Yes, getting in early with online comments is a good idea - more people will read them, the earlier they get in. As you did with the Spectator article, Angela, which I'm guessing probably meant "dropping everything (or nearly everything)" to get it in quickly.
Also, if there are annoying commentators, their comments will be lower and so will likely be read by fewer people.

However, I'm not giving up on letters. I'm going to send my letters in to the Spectator in a while (just going to go out and get some sun) and then plan to write to the Telegraph. If one only writes a letter that is 100-200 words or less*, it doesn't have to take too long.

* my longest draft Spectator letter is over 300 words (as range they had went up to 289 words for last two editions) but have done shorter versions
 

WillowJ

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Location
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Very good ideas! :D

And lets try to keep the letters focused on explaining the good research--not tearing down the (bio)psychosocial school. Let the facts do that.
 

WillowJ

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Does anybody have stats for the amount of spent on biomedical research in the UK?
 

Dolphin

Senior Member
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Does anybody have stats for the amount of spent on biomedical research in the UK?
It's basically 0m for grant applications to the Medical Research Council (they have funded little bits of other biomedical research (like part funding a study on XMRV) but haven't approved any researchers who have filled in a grant application through the normal means and asked for money).
 

Dolphin

Senior Member
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17,567
I'm sure it's right in front of my face.... but I can't find the Library. :ashamed: We do have one, don't we?

I was hoping to link some relevant papers....
Look for a building which people are going in and out of holding books. boom! boom! (as Basil Brush would say - you probably don't know him)
My PM also gives a clue.
 

WillowJ

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It's basically 0m for grant applications to the Medical Research Council (they have funded little bits of other biomedical research (like part funding a study on XMRV) but haven't approved any researchers who have filled in a grant application through the normal means and asked for money).

Well, I thought so... but then I wondered, how did the Kerr and Kennedy studies get funded?
 

WillowJ

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oh, here we go, Kerr's 8 genomic subtypes:

This work was supported by grants from the Chronic Fatigue Syndrome Research Foundation (CFSRF), UK (salaries of JG and DC), Sir Joseph Hotung (salary of JRK), and a Wellcome Trust Vacation Scholarship (awarded to LZ).

and Kennedy's increased neutrophil apoptosis:

The study was funded by the charity ME Research Group for Education and support (MERGE), Perth, UK. Further support was also received from the Sir John Fisher Foundation (educational grant).
 

Dolphin

Senior Member
Messages
17,567
Looks like the Telegraph article is going ahead (in some form anyway) - Tweet from MP from 3 hours ago:
@WeirdSid oh this one isn't on bipolar (that's to come) - this one is on ME and the stigma of mental illness.
 

Angela Kennedy

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Location
Essex, UK
For some reason, that made me laugh. Not sure why, though....

Maybe because they just won't give up on ME and mental illness. They sure don't listen, do they? It's not about "the stigma of mental illness"; it's that it isn't a mental illness and we're not getting the medical treatment we need as long as they keep treating it like a mental illness. Treatments for mental illness do not affect ME. Got ears? Sheesh.

I checked at 7 am BST (40 minutes ago)- it's not up on that link- and I'm having trouble navigating the Telegraph site to search for it.

If anyone locates it- I'd be very grateful if they highlight it as soon as they can. Thank you in advance! :)
 

Enid

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Location
UK
Just to let you know I've put in my comment - Telegraph being easy to respond to for me. I did enjoy the other comments - lots of good points made. Thanks for the link Sherrie.
 

Jenny

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Location
Dorset
Here is my letter:

Max Pemberton (Health, 29 August) states that the gold standard for treatment for ME is supervised exercise and talking therapies. He is presumably referring to the PACE trial which recently evaluated these treatments. But his statement that at least one in three patients in this trial recovered is completely false. If he had bothered to read the paper properly he would have seen that after a year of treatment patients receiving graded exercise therapy had on average increased the distance they were able to walk in six minutes from 312 to 379 metres. This is far from recovery at normal walking speed healthy people typically cover about 500 metres! And patients receiving cognitive behaviour therapy for a year did not significantly increase their walking ability at all.

Medical research (mainly American) clearly shows that those with ME have complex and severe neurological and immune system abnormalities. Im not a severe case, but having ME feels like a combination of a bad case of flu, coupled with a hangover, which has lasted for decades and cost me my career (as a psychologist). Some patients have been bed-ridden or house-bound for much of their lives, with a quality of life which is less than that of many end-stage cancer patients. Dr Pemberton says that we refuse treatment, but in reality we are desperate for it. However, many of us could not even get to our local hospital to participate in the types of therapies he refers to. In some cases our pain, suffering and despair at the lack of support we receive from the medical profession leads to suicide. Dr Pemberton is correct to say that the MRC has funded some (very small-scale) research into viral causes, but the amount of investment in biomedical research is completely insignificant compared with funding for other chronic diseases. It is an outrage that there has never been any serious attempt in this country to research or treat this devastating condition.

Dr Jennifer Kidd
 

Dolphin

Senior Member
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17,567
Good letter, Jenny.
Hopefully they'll be willing to edit it; on Friday, the paper had 19 letters ranging from 23-182 words.
 

Firestormm

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Location
Cornwall England
Good letter Jenny.

I also find it very strange that Dr Pemberton appears to be at odds with what Prof Wessely wrote in the Spectator. I wonder if he even read that article?
 

Dolphin

Senior Member
Messages
17,567
Change in Telegraph article from Friday - anyone able to check the hard copy?

Change in Telegraph article from Friday - anyone able to check the hard copy?
"A major British trial published in The Lancet found that at least one in three patients with ME recovered using this approach."
to
(on website now) "A major British trial published in The Lancet found that at least one in three patients with ME improved or recovered using this approach."