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

[Jenny]

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."

Ah - that's annoying. Wish I'd checked today's version more carefully!

Jenny

 

[Esther12]

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."

Good that he recognised what an important error that was, apologised profusely, and then went on to explore whether such misrepresentations as to the efficacy of treatments available for CFS may be a more likely explanation of the anger and resentment patients feel, rather than them just 'having it all wrong'. Otherwise he would have seemed like a bit of a dick.

lol - he doesn't even seem to realise the extent to which that change undermines the thrust of his argument. "Why would patients with a severe and disabling condition be unimpressed by treatments which were sold to them as paths to recovery when they lead to one third of them gaining an 'improvement'? It must be because of the stigma that surrounds mental health issues."

 

[Dolphin]

I just sent in various versions of my letter (78-129 words excluding "August 29" which may not be in it if other people reply). Not my best work by far but wanted to get something in quickly.

One should get an autoreply.

Best of luck to anybody else writing in. Remember, best to keep them under 200 words or most likely they will either be edited or ignored.

 

[Dolphin]

Ah - that's annoying. Wish I'd checked today's version more carefully!

Jenny

If you had the time/energy you could re-draft and re-send.

 

[Wonko]

He's still wrong - no one "recovered" apart from the mickey mouse re-definition of "recovered" used by the PACE trial, even by their own initial defintion of "recovered" no one did.

 

[justinreilly]

Pls everyone copy and paste the comments they wrote on the website into 2 emails: one as a letter to the editor (dtletters@telegraph.co.uk) and one to the editor-in-chief of the paper, Tony Gallagher (telegrapheditorial@telegraph.co.uk). My email to the editor is below.

Subject: Request for retraction of "Protestors Have Got it all Wrong" by Max Pemberton, Mon. August 29, 2011

Center for M.E. Law and Policy​

Justin Reilly, esq.
Executive Director
justinreilly@hotmail.com
[redacted]

Mr. Anthony Gallagher
Editor-in-Chief
Daily Telegraph
dtletters@telegraph.co.uk

BY EMAIL

re: Protestors Have Got it all Wrong by Max Pemberton, Mon. August 29, 2011
http://www.telegraph.co.uk/health/8641007/Protesters-have-got-it-all-wrong-on-ME.html


Dear Mr. Gallagher,

I am writing to voice my objection to the highly inaccurate and one-sided article, supra, by Max Pemberton. Rather than bore you with a long-winded response, suffice it to say, I agree totally with Ms. Kennedy's critique of Prof. Wessley, infra.

Prof. Wessely has conducted a decades-long war on ME science and patients as documented in Prof. Malcolm Hooper's excellent publications including "Defiance of Science." meactionuk.org.uk

Prof. Hooper has issued a letter to the Observer for a similar, but less egregiously inaccurate, article, that it has published. It is extremely informative. Please read at http://www.meactionuk.org.uk/Response-to-Observer-article.htm

This is the least accurate of the barrage of recent defamatory articles spearheaded by Prof. Wessely.

I ask that the Telegraph issue a full retraction of the article. Failing that, please review Prof. Wessely's letter and Ms. Kennedy's comment and issue retractions for all of the inaccurate and misrepresentative points made in the article. In addition please publish an article about Prof. Wessely's war on M.E. science and persecution of M.E. patients.

Mr. Gallagher, I am personally pleading with you to investigate this matter and do what is right, retract the article. Lives are at stake. I very much look forward to your response.

Sincerely,

/S/

Justin Reilly, esq. for
the Center for M.E. Law and Policy


Addendum:

Comment (in comment section to above-mentioned article,
http://www.telegraph.co.uk/health/8641007/Protesters-have-got-it-all-wrong-on-ME.html)
by Angela Kennedy, University Lecturer and M.E. expert:

"There is so much wrong here it is difficult to know where to start, so I'm limiting my comments to a few issues. We should perhaps start though with the allegations of big bad ME patients committing "harassment, bullying and death threats". There has recently been a sustained and
ongoing negative PR media campaign claiming ME/CFS sufferers and supporters are criminally harassing researchers. There are key problems with these articles/radio programmes:

1. The allegations themselves are unsafe. For example, an anonymous comment that "you will all pay" is deemed a 'death threat', when no threat is actually made, and the comment appears to denote instead a prediction
of being accountable. Ironically, David Cameron used the phrase "you will pay" towards rioters recently, without it being deemed a 'death threat'.

2. There has also been a false categorisation of legitimate, non-criminal action by ME/CFS sufferers and their supporters (such as requests under FOI legislation, official complaints through various public agencies etc.)
as 'malicious harassment', or 'abuse' or 'intimidation. Legitimate actions are juxtaposed with alleged acts of criminal harassment to construct non-
criminal parties as harassers. 3. These articles/programmes then go on to misrepresent any objections to psychogenic dismissal of the illnesses diagnosed as ME or CFS. Reasonable objectors have been falsely deemed 'extremist', even criminal, but no chance is given to such objectors to express their position. Unfortunately, the claims here about why ME patients might object to psychogenic explanations are simplistic and inaccurate. Why DO patients object to psychogenic explanations for their illnesses? They do firstly
because psychogenic explanations for somatic illnesses are often implausible, and the result of fallacious medical reasoning: a lack of bio-medical knowledge, on an individual or disciplinary level, gives rise to often increasingly absurd and confused metaphysical explanations (beliefs, lies, delusions, the awesome 'Carrie'-like kinetic power of the mind over the body to nth degrees!) by default. This leads to psychogenic dismissal of serious physical illness, so that patients' lives and health (and quality of life) are endangered. Psychogenic misdiagnoses have led to tragic, premature deaths. One example in the medical literature is a woman with Creuztfeld-Jakob disease, who choked to death because
doctors thought her illness was psychogenic: her having had difficulties with coming out as lesbian, and a difficulty in finding organic signs (eventually found, but too late for the patient) leading to this fallacious conclusion.

Accompanying psychogenic dismissal of serious illness is the use of harmful treatments, such as incremental exercise regimes for people in cardiovascular and neurological failure (if you look at the medical literature this is a phenomenon related to ME/CFS, NOT caused by
'deconditioning'), or Cognitive Behavioural Therapy that blames the patient for 'thinking' themselves ill and not being able to recover.

On top of this, patients given psychogenic diagnoses are deemed, by medics and other health workers, other state institutions such as education and social security, communities, even families, as authors of their own misfortune, as moral deviants. This leads to contempt for
patients from all directions and serious mistreatment, including, for example, but in no way limited to, the withholding of benefits for people in serious need.

So, a patient facing a psychogenic explanation, whether in a media campaign like in recent weeks, in an opinion piece from a young doctor, in a clinic, is facing a HIGH potential of misdiagnosis, with a HIGH potential for serious adverse effects of this. Rationality and self-preservation will inevitably lead to protestation from patients, though they may still find themselves, at least initially, reeling from such a whirlwind of absurdity from professionals they are exhorted to trust and defer to, and usually do.

Lastly, Max's conflation of 'mind' and 'brain' is mistaken. One is an abstract concept denoting the act of thinking. The latter is a part of the body. While the brain may enable the act of thinking, it is not the same thing as a 'mind'. Psychogenic explanations are highly problematic, and the
assertion that "As a model for understanding a condition, its as valid as any other" is sadly a declaration of uncritical faith, not of rational, scientific analysis."

 

[Min]

The charity Invest in ME have issued a letter to the Press Complaints Commission regarding recent ME articles in the media which have presented only one viewpoint.

 

[Enid]

Great to hear Min - hoped they might being the best we have in promoting (and bringing researchers) over years. I see the MEA are responding too. Hoping the whole nasty business will backfire on the instigators of this media campaign (and of course their complete and willful ignorance here in the UK Can't help noticing the glaring/combatative eyes in the face of the author here - happily unlike any Doctor I've met.)

 

[Dolphin]

If you're replying to Telegraph, best to reply today

If you're replying to Telegraph, best to reply today (as they use letters on recent items).

dtletters@telegraph.co.uk (dtletters @ telegraph.co.uk)

"Please include name, address, and work and home telephone numbers."

"If you haven't included your address and telephone number your letter will not be considered for publication. Only an abbreviated form (town/village and county) will be used on the letters page."

I've seen some good letters; however, letters I've seen were generally over 200 words. I think the Telegraph will either not use them or edit them (and they may not edit them the way you would edit them).

Best to do a letter under 200 words I think or if you do one over 200 words, if possible also send in an edited version under 200 words.

 

[WillowJ]

I received an autoreply containing this message:

If you have sent it as plain text, we will have received it. If however, it was sent as an attachment, please send it again in the main body of the email.

mine was rich text or html (and I had one word in italics), but it was not attached in a document or file

should I re-send using plain text?

 

[drjohn]

For some balance to Professor Simon Wessely's views, Dr Max Pemberton, (Protesters have got it all wrong on ME, Daily Telegraph, 29 August 2011) might enquire and report in a follow up article, whether there are any psychiatrists who do not think that M.E. (and I mean Myalgic Encephalomyelitis, not Chronic Fatigue Syndrome) is a mental illness that should be treated by them - and who would be prepared to say so publicly, without feeling they were rocking the profession's boat too much?

It would be instructive to discover how many people with M.E. (separated out of the CFS bundle of illnesses) have been referred to psychiatrists and returned to the care of their GPs with a note saying this was not a case for their speciality, without having had any treatment at all and also, of those who did have the treatments that Professor Wessely recommends, what percentage have not recovered at all, or were worse after it.

Will Max investigate some other views, or just settle for Professor Wessely's say-so?

Yours sincerely
Dr John H Greensmith
ME Community Trust.org

 

[Firestormm]

I only ask that people respond to what was actually said in the articles themselves - one might stand more chance of being published.

 

[drjohn]

Can't be absolutely sure but I think I have used rich text and I have certainly used italics, I think it is attachments they won't have. I usually prepare work in notepad and then copy it into an e-mail. It also gives me a folder to keep for a short while at least if anyone else sends a letter or makes a comment about the same thing. The idea is that, when I have a moment, I delete the older ones -- I have thousands!!

 

[WillowJ]

thanks, drjohn

(I view all my incoming emails in plain text so as to have the background grey for easier reading and no colorful, large, or otherwise jarring fonts, and the html does come as if an attachment, but I think this is different from what they mean, and I can easily convert to html whenever needed)

 

[Enid]

Found in the Telegraph archives (2008) a Max Pemberton article on ME. Interesting because of the recognition of a multi system illness - one would have thought he should have kept up with science in the intervening years. Ignorant then and even more so today.

http://www.telegraph.co.uk/health/3692446/Why-ME-remains-a-mystery-to-doctors-and-their-patients.html

 

[Bob]

I just thought I'd point out that we don't actually have any 'recovery' data for the PACE Trial yet. That is yet to be published.

A major British trial published in The Lancet found that at least one in three patients with ME improved or recovered using this approach.

I can't work out where he got "at least one in three patients". I can't think of anything that this might relate to in the published PACE Trial paper.

The PACE Trial paper published data for participants who were in a 'normal range'.
'Normal Range' is a concept devised by the authors, for the purposes of the study, and does not indicate good health or recovery.
If Pemberton is refering to the 'normal range' figures then he is being misleading because some patients were already in the 'normal range', or close to it, before entering the Trial (or after receiving SMC), so the 'normal range' figures do not indicate how many participants actually improved by a significant amount, but only how many patients were in the normal range whether they had improved or not.

If Pemberton is refering to the 'normal range' figures, then the 'one in three' figure does not refer to patients whose improvement was attributable to GET or CBT, but it refers to improvement attributable to SMC+GET (28%) or SMC+CBT (30%) (SMC = specialist medical care).
The net number of participants in the 'normal range', whose improvement (but not necessarily a significant or clinically useful improvement) was attributable to GET or CBT, was 13% for GET and 15% for CBT (Improvement in the SMC group was 15%).

Using a fairer assessment method of the Trial, the number of participants who improved by a minimum amount (i.e. at least a clinically useful improvement), for both of the primary outcome measurements, was 15% (attributable to CBT) and 16% (attributable to GET). But, to emphasise, this only indicates that the participants had been helped by at least a minimum improvement, and does not indicate any type of recovery. Put another way, about 85% of participants were not helped by GET or CBT, using a 'post-hoc' assesment of the trial which was included in the published paper.

The average improvements in fatigue and physical function, attributable to CBT and GET, are even less impressive.

Spin. Smoke. Mirrors. Lies.

 

[Dolphin]

I just thought I'd point out that we don't actually have any 'recovery' data for the PACE Trial yet. That is yet to be published.



I can't work out where he got "at least one in three patients". I can't think of anything that this might relate to in the published PACE Trial paper.

The PACE Trial paper published data for participants who were in a 'normal range'.
'Normal Range' is a concept devised by the authors, for the purposes of the study, and does not indicate good health or recovery.
If Pemberton is refering to the 'normal range' figures then he is being misleading because some patients were already in the 'normal range', or close to it, before entering the Trial (or after receiving SMC), so the 'normal range' figures do not indicate how many participants actually improved by a significant amount, but only how many patients were in the normal range whether they had improved or not.

If Pemberton is refering to the 'normal range' figures, then the 'one in three' figure does not refer to patients whose improvement was attributable to GET or CBT, but it refers to improvement attributable to SMC+GET (28%) or SMC+CBT (30%) (SMC = specialist medical care).
The net number of participants in the 'normal range', whose improvement (but not necessarily a significant or clinically useful improvement) was attributable to GET or CBT, was 13% for GET and 15% for CBT (Improvement in the SMC group was 15%).

Using a fairer assessment method of the Trial, the number of participants who improved by a minimum amount (a clinically useful improvement), for both of the primary outcome measurements, was 15% (attributable to CBT) and 16% (attributable to GET). But this was only a minimum improvement.

The average improvements in fatigue and physical function, attributable to CBT and GET, are even less impressive.

Spin. Smoke. Mirrors. Lies.

Good points, Bob.

In case, you missed it, on Friday, the article said:

"A major British trial published in The Lancet found that at least one in three patients with ME recovered using this approach."

this was changed to

"A major British trial published in The Lancet found that at least one in three patients with ME improved or recovered using this approach."

 

[Enid]

Much shuffling about and changing of positions no doubt (well the science is in).

 

[Bob]

Good points, Bob.

In case, you missed it, on Friday, the article said:

"A major British trial published in The Lancet found that at least one in three patients with ME recovered using this approach."

this was changed to

"A major British trial published in The Lancet found that at least one in three patients with ME improved or recovered using this approach."

Thanks Dolphin.

I've been away for a few days, and I'm slowly catching up with the media storm!

Got to give credit to Wessely for his total and utter manipulation of the media.

 

[Bob]

Surely a highly educated physician should be able to understand that only 1 in 3 improved or recovered using the technique is very feeble? Aren't our doctors told by the CDC not to routinely treat us with antivirals because only 1 in 3 of us have detectable EBV infections? That is, antivirals for EBV are NOT considered legitimate treatment for ME/CFS because only 1 in 3 of us is likely to benefit. Or am I wrong there?

Surely many of our treatments give improvement if not recovery in 1 out of 3 patients...?

The actual (unspun) figure is 1 in 7 patients improved from CBT and GET (No more than 16%).
6 in 7 participants did not benefit from CBT and GET.