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Gizmodo Article:The Battle to Finally Understand Chronic Fatigue Syndrome

Messages
36
I don't condone harrassing researchers, nor do I believe we should stop asking questions, even when things appear to be going in our favor. To stop asking questions is to ignore history in our illness.

In response to the above quote, I would point out that @viggster knew nothing of the SMC control of all me/cfs media stories nor of Welcome Trust's history of involvement in discrediting biomedical research into me/cfs.

Further, apparently all he knew about the author he later said he got from the Mozaic site, so discussion about whether or not Virginia was well-intentioned is speculation only, not "clearly".

BTW, and this is a theme in many posts in this thread, that Virginia just got a quote wrong. Getting a quote wrong is not all that Virginia did, she actually got a whole interview wrong. As Mary said, other parts of her discussion with Virginia should have made it clear on which side of the issue she stood. So when anyone dismisses Virginia's incorrect quote (it plays a key role in setting up the structure of the article by bridging between patients and researchers etc) they really are making light of the issue.

If you accept that the error was serious, you have to reassess intent. I am not saying she intended to paint Mary in a bad light, just that the question must be asked and not dismissed as inconsequential.

The argument that if we educate Virginia she will be on our side is somewhat mute as Mozaic/Welcome/
Gizmodo would not publish that sort of article, so the chances of her having opportunity to redress on such a large-scale are vanishingly small.

Here is the narrative of the article: Jason (Jason is no-one of note, among UK researchers, or the public) says the illness is serious (big deal, no-one cares that much about ME or CFS) but Jason also says patients can be fractious, because he sees both sides of the issue (so Jason is a good guy, yet even he thinks patients are unruly). The artifice here is to build up Jason, not to show how serious the illness is. The more Jason is built up, the more seriously the reader will take his claims about unruly patients.

Then we go to Mary Dimmock who is even a patient who thinks patients are unruly. Then, we shift to other UK exhortations from the poor guys at the workface, the researchers, who have bent over backwards for patients to develop the CMRC which is really making progress on solving this disease.

It's a pretty standard public relations strategy. It works on building up the voice (Jason) who then plays a key role in tearing us down. I certainly don't see it as a tale of two halves. The first half only seems good for us, but it works to make the second half better.

These are all fair points and I think it provides enough doubt that we would be right to be wary. But as a Bob says, often the best article to judge is the second (if it is ever written), because by then the author will have received criticism (constructive or otherwise), will have a wider body of opinion and information to draw from and may have taken a standpoint herself. What we can't say, as we can with anything that comes from the SMC or one of the psych's trusted mouthpieces, is that this comes direct from BPS HQ. I think therefore, despite the issues that have been discussed at length in this thread, we can't make assumptions about her motives and, regardless, shouldn't be tempted to jump in at her with both feet.

It will be interesting to see what Holgate says about the way he has been quoted. If he were to say that he felt his comments had been misconstrued or misrepresented then we have more to go in with regard to Gerwin's motives. And, if he did say it, it would be reasonable to ask in what circumstances that occurred.
 
Messages
36
This is a harsh reality. However I am not sure that either of the two journos involved in this thread fall within this description. It would have been nice to have a few questions answered though to resolve any doubts. And it is regrettable that some try to close down such questioning.

Another reality which is more apparent these days is conformity to culture within a publication. Only those with a culture that extends from the top get promotions, so the culture pervades and perpetuates. In this environment, journos may still believe what they are writing (this is not necessary), however they have usually been groomed or biased by the culture. So they are trained to accept the view of establishment ie researchers over patients etc. I'm afraid this has already happened with respect to me/cfs.

More clearly this is illustrated by the entrenched conservatism of Murdoch run media, not just newspapers but television, internet, where unashamedly political viewpoints color just about every article.

This is definitely the case with CFS/ME. If the attitudes and beliefs of those who mentor you, or those who mentor them etc are that it is a psychological illness and that patients are unreasonable and threatening then you I'll believe that to be the reality and that will pervade your own writing. If a small minority then give you grief it immediately reinforces those preconceptions. It's self-perpetuating until evidence comes along that is so persuasive that it cannot be ignored.
 
Messages
36
@Jonathan Edwards, OK, fair point that we shouldn't expect journalists to be our friends. That would be naive. But we do have some journalists who are very sympathetic, supportive and friendly towards the community. They often either have ME themselves or they know someone with ME. So we can expect a sympathetic hearing from some journalists. For other (disinterested) journalists, we will need to continue to spend time educating them. I wasn't satisfied with the ultimate outcome of the Isabel Hardman article in the Spectator, but I did have a constructive interaction with her, and she did seem to genuinely want to be fair and balanced. (But clearly failed from the point of view of the community.) I think she was upset by the reaction to the article because she genuinely thought she was being helpful. (I'm not sure how she thought she was being helpful, but she did.) I think her willingness to be helpful was demonstrated by her adding a PPS to the article that reflected the feedback she'd received from patients after publication. Anyway, my point is, perhaps that is the sort of journalist who may respond positively to firm but patient and gentle nurturing, rather than immediate hostility and suspicion. Other journalists are never going to listen to anything we say. And I think it would be helpful for us to be able to identify journalists who are willing to listen and who may potentially modify their output, and treat them kindly.

Amen brother. I think she thought she was being helpful because she was correcting Liddle's misreporting of the conclusions (as written by the authors) of the PACE follow up paper, which wasn't suggesting that ME is not a chronic illness after all, as he suggested, or piffling, as the overall tone of his piece rammed home.
 
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2,087
I agree, @richio76

The spin is, in and of itself, a fascinating story. Any good journalist should be interested in it.

This is what I don't understand.
This story keeps on giving yet so few are interested.

We have :

Doctors in Norway trialling drugs for a disease without any cure because they listened to a patient who got better by chance.

A Nobel prize winning scientist who can't get funding to research a disease his son is crippled with.

A knight of the British Empire about to be found out and who is trying desperately to save his ass.

Professors in one of the worlds top universities making schoolboy errors in clinical trials where recovery can mean worsening.

Eminent professors from around the world trying to point out the truth by writing an open letter to one of the UKs top academic journals.

Claims of harrassment that are made on the basis that the dictionary definition of harassment is not approriate.

I could go on but what more do the journalists want ? Is it that the whole story is too unbelievable ?

Oh yeah and how about throwing in some CBT into the mix.... That's right, all patients need to do is a bit of CBT and exercise but they'd rather be housebound.
 

SOC

Senior Member
Messages
7,849
I could go on but what more do the journalists want ? Is it that the whole story is too unbelievable ?
I suspect it's partly that and partly that there is a very powerful lobby on the side of BPS school. The journalists simply don't have the courage to stand up to that kind of power. Now that the NIH is starting to support us and US scientists are doing the same, we may soon see some US journalists willing to stick their necks out feeling fairly confident they won't get bitten. I don't think we can say the same for UK journalists for quite a while yet. There's an unbelievably massive and powerful anti-ME patient structure there that will take a lot of dismantling before any journalist will have the courage to run the story you are proposing.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
We have :

Doctors in Norway trialling drugs for a disease without any cure because they listened to a patient who got better by chance.

A Nobel prize winning scientist who can't get funding to research a disease his son is crippled with.

A knight of the British Empire about to be found out and who is trying desperately to save his ass.

Professors in one of the worlds top universities making schoolboy errors in clinical trials where recovery can mean worsening.

Eminent professors from around the world trying to point out the truth by writing an open letter to one of the UKs top academic journals.

Claims of harrassment that are made on the basis that the dictionary definition of harassment is not approriate.

I could go on but what more do the journalists want ? Is it that the whole story is too unbelievable ?

Oh yeah and how about throwing in some CBT into the mix.... That's right, all patients need to do is a bit of CBT and exercise but they'd rather be housebound.
Great plot! It might be worth doing a tiny bit more work on that and trying to interest some journalists with it?
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Prof Peter D White acts as a consultant to insurance companies.

The Trial was part funded by the Department for Work and Pensions (DWP).

https://www.whatdotheyknow.com/request/part_funding_of_the_pace_trial_b

"Additionally, one of the secondary measures considered as part of the
trial, was the impact that the trial would have on ability for
employment and study."


Q: How many other studies, with regard to particular illness' has the
DWP been involved in with funding prior to this?

A: We are not aware of any earlier or subsequent similar trials that have
been funded by the Department.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
PACE Trial influence on government policy beyond immediate area of ME, CFS:


http://gtr.rcuk.ac.uk/projects?ref=G0200434

[Click on Outcomes > Click on Policy Influence]

"IAPT [Improving Access to Psychological Therapies] scheme extended to long term conditions and medically unexplained symptoms"

"Participation in advisory committee
"2 principal investigators are members of the Department of Health steering group to extend the Increasing Access to Psychological Therapies to UK primary care patients with medically unexplained symptoms"


"IAPT team training
"Influenced training of practitioners or researchers

"Impact PDW provided advice and leadership to an IAPT DoH pathfinder site to provide graded exercise therapy to patients with longterm health conditions and medically unexplained symptoms.

 
Messages
13,774
On re-reading this, this sounds more critical (from the journalist) of the UK approach than I'd appreciated:

Unlike Jason’s emphasis on transparency and patient participation, however, the secret to the UK collaborative’s success, according to Holgate, is a membership charter that forbids harassment or abuse of researchers. In effect, patient groups are banned from whipping up a media frenzy over research findings.

The charter has already been tested a couple of times, says Holgate, who gave the aggressors a choice: apologise or leave. He’s even suggested that he’ll disband the collaborative completely if all parties don’t play by the rules.

It's a weird article, but surely that contrast is meant as a jab at the CMRC? Other parts sound like a typical Wellcome-style puff-piece though, so who knows? Maybe the editor wanted to go in a different way to the journalist?
 
Messages
13,774
Mosaic (Mark Henderson) had said:

In keeping with this open access publishing model, we also want to be open about our editorial processes. We'll be encouraging our writers to blog about their progress, and to ask questions of their readers, recognising that
among their audience will be people who know their subject better than they do. And after we publish, we'll be curating discussion. Science doesn't stop when a feature is published, so neither should we.

http://blog.mosaicscience.com/introducing-mosaic/

Any idea is there was any info provided on early drafts for this article, editing process, etc?

Mark Henderson, has written some of the typical poorly researched drivel about CBT/CFS that is written people who think they're so much more intelligent and enlightened than patients:

Cognitive behavioural therapy


The Times
From The Times


September 15, 2007
Cognitive behavioural therapy (CBT), which seeks to improve the symptoms of illness by changing patients’ attitudes, thoughts and feelings, often strikes people as flaky. It sometimes seems to suggest the power of mind over matter, chiming both with New Age ideas that a healthy body flows from a healthy spirit and the old-fashioned “pull yourself together” approach to psychiatric medicine.


Few psychiatrists, however, dispute that CBT can be helpful to patients with depression, anxiety and even schizophrenia. Courses seem to change the way that people approach mental illnesses, allowing them to alter their behaviour in constructive fashion.


Now the technique is showing promise in more unlikely fields, too. Several studies have shown that it can improve the prognosis for some cancers, and this week, Professor Trudie Chalder, of King’s College London, announced that it can help people with type 1 diabetes.


Though her study has not yet been peer reviewed or published, Professor Chalder described the results as positive. Not only did subjects report improved attitudes towards their condition, but their blood sugar levels went down, too. She took pains to point out that they were not “thinking themselves better”; CBT instead seems to have empowered people to eat more sensibly and to exercise more, improving their physical condition. But the message was clear: the technique can have tangible benefits in a disorder that has a manifest physiological cause.


Such studies are feeding a growing consensus that CBT has a lot to offer throughout medicine, beyond those conditions in which patients’ thought processes are more obviously involved. Even when diseases have a clear physical cause – a virus, as in HIV, or an auto-immune reaction, as in diabetes or arthritis – psychological factors can have a major effect on outcomes. Compliance with treatment regimens, diet and exercise, and background mental health are often critical to a good prognosis, and CBT can improve all of these. It is decidedly not a treatment that can help only when illness is all in the mind.


That misleading impression, however, still inspires hostility towards CBT among people who might benefit greatly. Chronic fatigue syndrome (CFS) is a case in point. The National Institute for Health and Clinical Excellence has recently recommended CBT and a related strategy, graded exercise, for the condition, on the back of good randomised clinical trials that indicate a benefit. There are no other therapies for CFS with such good evidence in their support, yet some patient groups have reacted with anger.


For these critics, CBT is part of a medical crusade to write off their condition. A prescription that sounds like glorified counselling seems like an allegation of malingering. Yet while the origins of CFS remain obscure, and factors such as infection may be involved, an acknowledgement that psychology may also be implicated does not imply this at all. Even if CFS can be at least partially psychosomatic, such symptoms can still be real and distressing. They deserve to be taken seriously.


Medicine has moved on from the view that only conditions with an unambiguous cause – a virus, tumour or injury – are worthy of attention. The problem comes in finding an appropriate treatment, and nonspecific therapies such as CBT, which help patients to manage their symptoms, are often the best there are.


A recommendation for CBT, too, says nothing about the origins of ill-health. The biology of cancer and diabetes is quite well understood, yet there is evidence that CBT can help and many patients are keen to have it. It is unfortunate that people with CFS do not think likewise. To embrace the one treatment that has been shown to be effective against their illness does not mean it is imaginary.


Mark Henderson is the Science Editor of The Times Dr Copperfield returns next week