Telegraph Tomorrow - Exercise and positivity can overcome ME

[Nielk]

Since it was first reported by a journalist.

Reporters do not simply report inn the news anymore; they create the news that they wish to report.

 

[Bob]

One could almost feel sorry for them, since they are probably innocently parroting what they've been fed, thinking it's all God's truth. They'll soon find themselves face down in the mud crying, "WTF! We were only trying to help!" ...except they are supposed to be responsible journalists and check up on the info they're fed instead of just regurgitating it without thought. So there goes my sympathy. You swim with the sharks, you get bitten.

I have zero sympathy for the editors. The journalists are not innocent parties here. They may be partially ignorant, but they are not innocent bystanders. Perhaps they didn't intend to be malicious (who knows?), but I'm sure they intended to be controversial, and they made no effort to introduce balance into this article.

And why place it on the front page? What was the motivation for that? Since when were the media so interested in CFS, and consider it a front page issue? (Did the editor go to the same school/university as a pace author?)

 

[worldbackwards]

What the heck is this... an opinion poll about the reality of a disease? Seriously? As if opinion matters in medical diagnosis? What is this YouGov thing and what does it have to do with Gov?

Yougov is a UK polling company, like Gallup, that sort of thing. It doesn't have anything to do with 'gov' as such, though if I remember rightly it was co-founded by a Tory MP. If you're interested, they already polled the States on this question last year.
http://forums.phoenixrising.me/inde...syndrome-is-a-real-illness.40845/#post-657017

 

[Bob]

What the heck is this... an opinion poll about the reality of a disease? Seriously? As if opinion matters in medical diagnosis? What is this YouGov thing and what does it have to do with Gov?

YouGov is just a private polling company. It has nothing to do with government, except it does a lot of election polling.

Edit: crossed posts.

 

[sarah darwins]

Whats a sub?

Sub-editor.

"Simon" is half-right, at best. Sub-editors do tend to write headlines and straplines, although in these days of electronic copy filing journalists on many papers have much more input into the process than they once did. There is alarmingly little in the way of filters between journalists and the reading public in British newspapers (which have never subscribed to the quaint notion of employing 'fact checkers'; sub-editors used to do this in an informal way, but these days many articles appear online with so many straightforward factual errors and typos that it's clear no one is really checking them at all).

Simon also fails to mention that the "journalist" in question is the paper's Science Editor, and thus would have the authority to give a yes or no to any headline being proposed for a science-related story. Sub-editors are, as the name makes clear, junior to editors.

 

[Bob]

Submission for the CFS stock photo of the year award.
The Irish independent has helpfully portrayed a typical ME patient in yesterday's article...
http://www.independent.ie/life/heal...-positive-thinking-and-exercise-34148290.html

You've gotta laugh? Or cry?

 

[user9876]

Interesting that the GET group is the only one in which patients DID NOT report improvement in physical functioning between weeks 52 and 134. This suggests that GET may have inhibited the small improvement that appears to be the natural progress of the disease.

My initial guess is that this relates to the way the scale sf36 physical function scale acts. If you are mid scale and look at the questions then I think it is relatively easy to change a perceived threshold on some (i.e. move from not at all to with difficulty or from with difficulty to without difficulty). Looking at data from the ONS survey there is a lot of variability in which activities people struggle with which suggests that they might be quite close together and hence a small change in perception in the middle could lead to quite big movements. But outside of the middle I think there are bigger steps to move up to the next level so it may need a real improvement. So I suspect that the scale may have some internal ceiling effects due to the range of questions and lack of linearity. Which of course suggests their stats are rubbish.

 

[Valentijn]

Simon pronounces the piece "sensible". Case closed.
　
"Ollie, subs write headlines, not journalists. Piece itself seems sensible"

https://twitter.com/WesselyS/status/659325139490881536?p=v

I replied:

@WesselyS @sarahknapton CBT/GET = no effect. Average SF36-PF score = 61.4, or "recovered" to level of 75yo. So how "not chronic"? Spin & BS

I also don't see how the sub could be to blame, and not the author (I can't call her a journalist). The title and byline are taken nearly word-for-word from the article.

 

[worldbackwards]

Submission for the CFS stock photo of the year award.
The Irish independent has helpfully portrayed a typical ME patient in yesterday's article...
http://www.independent.ie/life/heal...-positive-thinking-and-exercise-34148290.html

You've gotta laugh? Or cry?

Laugh. Unexpected if nothing else!

 

[user9876]

One could almost feel sorry for them, since they are probably innocently parroting what they've been fed, thinking it's all God's truth. They'll soon find themselves face down in the mud crying, "WTF! We were only trying to help!" ...except they are supposed to be responsible journalists and check up on the info they're fed instead of just regurgitating it without thought. So there goes my sympathy. You swim with the sharks, you get bitten.

But it would be good for the sharks to set against each other. A complaint to ipso with Sharpes comments may lead to some interesting outcomes.

 

[Sasha]

Comment posted on the Telegraph in response to mine (I posted a link to the petition):

Robert Woodham, MD Sasha • 7 hours ago
as a practicing psychiatrist I am horrified by my colleagues sorry attempts to claim ME patients "as their own". my daughter has been sick with ME for nearly a decade now and it's abundantly clear to me that this is a neuroimmune illness, as it should be to any physician worth his or her oats. massively lazy science on the part of all involved. also, is the lancet familiar with the term "peer review" or are all said peers as corrupt and incompetent as this sorry lot.​

 

[Countrygirl]

Something more positive to read that reflects on the damaging drivel printed yesterday:

http://uttingwolffspouts.com/2015/10/28/the-scientifically-challenged-uk-media-strikes-back/

Prof Sharpe added: “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. If you live within your limits that becomes a self-fulfilling prophesy.”1

There is no science to substantiate anything the professor states in this sentence and I can think of no other illness in which a researcher would speak of sufferers in such a fashion, it is immoral, breaches the Hippocratic Oath and constitutes abuse of a vulnerable group of patients.

Another point to make, highlighted by John Cohen in Science6, is that the basis of the original trial’s supposed success has been undermined by this latest study. The PACE trial claim that GET and CBT were the best treatments for ME is demolished by the finding in this latest study, which revealed that all therapy options produced the same results. To quote John Cohen,

‘After analyzing the responses, the researchers concluded that the benefits reported in the original study, which assessed participants at 1 year, were maintained for at least another 1.5 years. But the participants randomized to receive the two interventions that initially did nothing also improved, and there “was little evidence of differences in outcomes” when compared with the people in the other treatment groups’5.

Sharpe et al try to explain this by claiming that participants undergoing other therapies switched to GET and CBT in the intervening period but there is no evidence to support this conclusion. I’d also like to query what condition participants are in now, as the suggestion that any improvement was maintained for ‘at least another 1.5 years’ implies their health could have declined after this period of time.

 

[Snow Leopard]

Submission for the CFS stock photo of the year award.
The Irish independent has helpfully portrayed a typical ME patient in yesterday's article...
http://www.independent.ie/life/heal...-positive-thinking-and-exercise-34148290.html

You've gotta laugh? Or cry?

Looks like several forum members, minus the dumbells.

 

[worldbackwards]

Sharpe et al try to explain this by claiming that participants undergoing other therapies switched to GET and CBT in the intervening period but there is no evidence to support this conclusion. I’d also like to query what condition participants are in now, as the suggestion that any improvement was maintained for ‘at least another 1.5 years’ implies their health could have declined after this period of time.

Isn't it also true that those in the SMC and APT groups were on the upswing at the end whilst the CBT and GET groups had levelled off? Which means further improvements over time would more likely be seen in the former groups rather than the latter.

 

[Sasha]

Something positive we can do:

http://forums.phoenixrising.me/index.php?threads/pace-media-coverage-golden-opportunity.40854/

 

[Gijs]

Is it the same in cancer? Can you overcome this disease by positive thinking and exercise too? If someone would said that everybody will think he is grazy. This exactly how i think about professor White en Chalder. I think these people have real issues from a childhood trauma or they get a lot of money from the goverment. If exercise helps you don't have ME but something else.

 

[meadowlark]

I also don't see how the sub could be to blame, and not the author (I can't call her a journalist). The title and byline are taken nearly word-for-word from the article.

Even if the head and deck are taken from the article itself, they represent a choice by the sub, approved by the handling editor, so the handling editor takes the fall. And in this case, the handling editor and the writer are the same person. (I don't know how things are at the Telly, but at most papers the science section is not exactly well-staffed, so that's not unusual. It also leads to their over-reliance on whatever way the corrupt Science Media Centre explains a scientific study.) Anyway, for most articles, if the sub and handling editor used a phrase right out of the text for head and deck, they may be mystified by people objecting to it. But M.E. articles are different. British editors know they are always controversial. Very few science articles are looked at so closely by a segment of their readers. And they attract an incredible number of comments from online trolls. Hot stuff.

I'm having a problem with multi-quote (brain fog) but someone asked why this was put on the front page. At the major papers (and I don't mean tabloids like the Daily Mail--none of what I write here applies to the Daily Mail, which puts up a lot of online content unedited) .... the editors of each section have a meeting every day and explain what the big stories in their sections will be, often pitching certain stories for the front page. The editor of the entire paper is the ultimate "decider" of what goes on the front page, but it can be by committee as well. And to get on the front page, a story must be in the public interest (the editorial point of view and prejudices of the paper influence that judgment) and sell the paper. I am sure that the Telly editors knew that a big M.E. story always sells it. The attention it gets from M.E. patients and their families alone will drive the numbers way, way up.

When I get upset about this current piece, I just thank God it wasn't written by Michael Hanlon. Though that's cold comfort.

 

[Cheshire]

You thought the Telegraph's article is pure shite?

Try The Sun for a change!

And, no, you're not dreaming, the date is 2015!

 

[Seven7]

Understand that ME is a source of revenue for Psys and they will fight and same for others like insurance company. I didn't know the guy had asked to comment before publishing, They had that campaign in hand and they were ready to counter attack. Now this is soooo bad that their counter attack will put us behind.

LESSON LEARNED I hope for the cfs community
1) When we prepare stuff like this we need to have the counter attack campaign ready.

Now we need to get into the media and promote Tuller paper. And start asking questions on why they ignore physical evidence and put it in the media and out there.

 

[charles shepherd]

MEA writes to The Daily Telegraph to ask them to retract and correct their inaccurate and offensive headings to the news item on the PACE trial

We will be sending a response to the actual news item later today

This latter response will not be placed on the MEA website immediately because doing so can affect the chance of a letter being published
CS

Dear Editor

Re: Daily Telegraph, Wednesday October 28th 2015 - Front page coverage of ME/CFS research and the PACE trial:
http://www.telegraph.co.uk/news/hea...tive-thinking-and-exercise.html#disqus_thread

I will be sending an 'intended for publication' letter to you in response to this news item later today.
However, it is factually inaccurate to state in the main heading that:

Oxford University has found ME is not actually a chronic illness



No such conclusion from 'Oxford University' was reported in the research paper, or the press release from the research group, or by anyone involved in the PACE trial from Oxford University
This is an important and prominent factual inaccuracy that requires an equally prominent correction/retraction.
So please could you let me know what action you will be taking.

I would also point out that the other heading to this news item:

Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise'

is misleading, insensitive and offensive to the thousands of well motivated people who are doing their very best to manage a complex long term illness that is classified by the World Health Organisation (in ICD10, G93:3) as a neurological (not psychiatric) disease.

It really is about time that the Daily Telegraph produced some balanced reporting on what is really happening to research in ME/CFS, such as the report in the Guardian:
http://www.theguardian.com/society/...cise-oxford-university-study-exercise-cbt-cfs

and the important research findings that were presented at the recent UK Research Collaborative conference:
http://www.meassociation.org.uk/2015/10/global-mecfs-research-22-october-2015/

Yours sincerely

Dr Charles ShepherdHon Medical Adviser, ME Association
Website: www.meassociation.org.uk