Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

[snowathlete]

If you are outside the UK, you may not fully appreciate the politics of media coverage of ME/CFS here in the UK

Health journalists have huge numbers of potential health stories pouring in on a daily basis and many of them rely on the Science Media Centre for 'spoon feeding' with abstracts, quotes and explanations from 'experts'

Writing about the controversies and complexities surrounding PACE or NICE takes a lot of time and effort and there aren't many investigative health reporters, or senior health reporters out there with more time to spare, who are willing to get involved with ME/CFS stories

In fact, following on from all the harassment nonsense a few years ago in the BMJ and on BBC Radio 4 there are still some quite senior health reporters who don't want to do ME/CFS stories at all because they believe they will be attacked if they upset the patient community

So reporters like JB do need to be thanked for producing an article like this

By all means add some constructive comments or criticism about the epidemiology, or what else should have been included

But don't just be negative and reduce the number of sympathetic journalists any more. The figure is low enough as it is!

CS

I agree with Charles. Given the context of the situation in the UK, all the history, culture, and complexity, the behind the scenes efforts of advocates in the UK, and the depth of the influences against us, this is a very good and helpful article. It would be a mistake not to welcome this, and an even bigger mistake to attack it. I know very well that everyone here has only the best interests of patients as their motivation, but all the same, people need to be careful not to unwittingly undo people's good work even if they don't recognize this as progress.

 

[Sean]

For me what was so fantastic about this article was that reading between the lines it is obvious that the Science Media Center and Simon Wessely have completely lost control of the narrative. In fact Simon Wessely was selectively quoted to look like the complete prat that he is.

I agree. This article is a lot more subtle and radical than it might first seem, especially to those not so familiar with the murky world of ME/CFS politics in the UK. I would suggest that the fact that it is in the DM makes it even more so.

I don't see anything in the article that would provide comfort for the PACE cult. If I was them I would be very concerned indeed that I had just lost control of the narrative.

This is an article to build on, not tear down.

 

[Deepwater]

I am saddened to once again see patients think that the best way to make progress is to keep quiet and and not make any waves, and show gratitude for any scraps thrown our way.

Don't forget that David Tuller is on our side now because his work has been criticized by patients, not praised.


@Barry53 I really don't understand how writing such a bland article is brave. The article can be distilled down to: "Side A said PACE is not good. Side B said PACE is good. There is also some biomedical research. Side A said it is good. Side B said it is not good." Honestly, I don't understand how it would be brave even if he exposed PACE for what it is.

I think there may also be a culture difference at work here. In UK newspaper terms this article is not bland, and Tuller's style would be completely unprintable. This really is a breakthrough for us - not the end of the battle by any means but a real breakthrough - take it from someone who has been subjected to UK press, medical and societal contempt for over twenty years on account of this disease.

 

[AndyPR]

Interesting comment left on the article.

 

[Valentijn]

What Ron told him, among other things, was that what is happening to patients in the UK and other countries that have bought into the PACE view, is barbaric, and that the medical and scientific communities there were contributing to massive suffering, and that the PACE Trials were bad science, could not support their conclusions, and should be retracted.

As an American, I fully understand (and prefer) that scientists and others be able to boldly speak their mind in the media. But the UK has draconian libel laws which make the situation extremely tricky. Suggesting that the PACE researchers are corrupt or incompetent at their jobs could very easily result in a lawsuit - where the person or website making or repeating that claim would have to actually prove the corruption or incompetence.

In addition to limiting what is said about PACE, these libel laws have also likely contributed to the ability of the psychosocial school to run rampant over the past few decades. It is simply too risky for other academics to challenge them, and risk their own careers and assets being lost in the process, not to mention the hassle of a court case.

Health journalists have huge numbers of potential health stories pouring in on a daily basis and many of them rely on the Science Media Centre for 'spoon feeding' with abstracts, quotes and explanations from 'experts'

As a point of clarification for those not dealing with the UK media, the SMC is not an official body, and is largely funded by private corporations and other institutions. Their defense of PACE was likely due to funding received several years ago from Queen Mary University London, the institution of one of the principal PACE authors. Simon Wessely is also on their board in some capacity.

They seem to get taken seriously in the UK due to having "science" in the title. Whereas in the US such an organization would be widely know for partisan bias, and no one except FOX would be using them as a source.

 

[anni66]

This isn't about Ron. It's about the content that he told the reporter in his interview. Having just been in a pretty intense 3 days of the science of ME/CFS, it was shocking to me to see an article still reporting that there's a big debate about PACE. The debates at the science meetings were about autoantibodies and gene expression, et al!

It seems to me that maybe in the UK people are so used to being in a country where they are mostly denied medical care for their disease, told it's "false illness beliefs", advised by persons in authority to exercise, which makes them worse, and being spoken to with sarcasm, disdain, and patronization, that any small mention of the "debate" that includes a mention of science seems like a "balanced" article.

When talking about the planets, do we still write a "balanced" article that includes the possibility that the earth is flat?

What Ron told him, among other things, was that what is happening to patients in the UK and other countries that have bought into the PACE view, is barbaric, and that the medical and scientific communities there were contributing to massive suffering, and that the PACE Trials were bad science, could not support their conclusions, and should be retracted.

That any scientist reading them should be shocked that they were even published, and that they make perfect fodder for a class on finding mistakes in publications. That is the story that needs to be told.

I don't care if Ron's name is in there. I want them to tell the REAL story of what is happening there. It's horrendous. THAT is the story that needs to be told, not some "balanced" view that makes it seem possible that PACE provides any data for anything and that CBT and GET are an alternative to be debated.

The debate now is over data and mechanisms of the DISEASE! The suffering caused by this stupid debate and the extent of the science were not in that article. I think it's a shame.

And time for all scientists and medical people to get into the 21st century and pay attention to SCIENCE in an open minded way, and stop contributing to the suffering of millions of people.

In the UK patients I know can't even get a saline drip! Ridiculous!

Where is the article that screams "PACE DEBUNKED", or "Accumulation of myriads of scientific studies unraveling the medical mystery of ME/CFS", or "How can we end the suffering of millions?".

So no, I don't like the article. I'm not balanced. LOL

Sadly the PACE promoters are all too aware that tide is turning- hence the proposals for the NICE guidelines to categorize many symptoms as minor/ psychological in basis to deny treatment. Sadly this is not getting coverage outwith ME community and will have significant impact. These shrinks have built too much of a financial empire to be able to acknowledge mistakes, they are now altering the constructs to perpetuate their legacy. Skype type CBT will be rolled out as a wonderful treatment for the housebound which will tick inclusion and treatment and cost boxes and the merry go round will keep turning. ... It sounds like a a b class horror movie - unfortunately it' s all too real. The press us in the hands of too few and has its own agenda. A targeted social media campaign may work - the big obstacle is the image of ME - it has not got past the " malingerer"/ "yuppie flu" of the 1980s here. Noone knows what it is like until they are/ hace a family member affected. We need a documentary such as " unrest" on prime TV, or better a Panorama type expose. Sadly too many people are too well connected to see that happen

 

[TiredSam]

They seem to get taken seriously in the UK due to having "science" in the title.

Plus their press releases for journalists are branded as "expert reaction" - here's a list of 20 "expert reactions" from their "for journalists" page:

http://www.sciencemediacentre.org/working-with-us/for-journalists/

So the average UK journalist thinks "great, it says 'for journalists' and I'm a journalist, and it says 'expert' so they must be, how nice of them to do my job for me and save me having to switch my brain on".

 

[Jonathan Edwards]

Honestly, I don't understand how it would be brave even if he exposed PACE for what it is.

There is a very precise reason. The reason why we are not getting this sort of coverage from the UK paper that usually exposes corruption and champions the ordinary person is that the journalist who has dealt with bad science at that paper in the past would lose all job prospects if he criticised PACE. If you criticise PACE in the UK there is a quiet phone call to your employer and the next morning you are asked to a meeting to reconsider your contract. I get emails from people to whom this has happened. The only reason why I am the only UK academic to call out on PACE is that I am retired so do not have an employer.

 

[Jonathan Edwards]

But the UK has draconian libel laws which make the situation extremely tricky. Suggesting that the PACE researchers are corrupt or incompetent at their jobs could very easily result in a lawsuit - where the person or website making or repeating that claim would have to actually prove the corruption or incompetence.

I don't actually think has anything to do with libel laws, Valentijn. When Wakefield wrote his nonsense it was easy to criticise it because he was not part of the establishment. This time the bad science comes from the establishment. The problem here is the network. The scientific network in the USA is just as bad but it has a different agenda.

 

[Jonathan Edwards]

I had another email from Jerome this morning. He understands perfectly what is going on. But he does not stray into areas where he is not qualified to judge. There is actually quite a lot of bad science on both sides. His job is to report what is going on, not to give an opinion where he has no personal grounds for doing so.

 

[suseq]

Agree with so many of the valid points already made. Given PACE was/is effectively a political tool and the DMail is a populist right leaning paper this piece is a huge step forward.

A whole page highlighting the contentious 'debate' surrounding ME is an achievement.

Hopefully positive feedback will encourage and enable Jerome Burne and other journalists to do much more to shine light on how ME and other illnesses caught in the BPS ideology are being misrepresented and mistreated.

 

[Stewart]

As an American, I fully understand (and prefer) that scientists and others be able to boldly speak their mind in the media. But the UK has draconian libel laws which make the situation extremely tricky. Suggesting that the PACE researchers are corrupt or incompetent at their jobs could very easily result in a lawsuit - where the person or website making or repeating that claim would have to actually prove the corruption or incompetence.

The reason why we are not getting this sort of coverage from the UK paper that usually exposes corruption and champions the ordinary person is that the journalist who has dealt with bad science at that paper in the past would lose all job prospects if he criticised PACE. If you criticise PACE in the UK there is a quiet phone call to your employer and the next morning you are asked to a meeting to reconsider your contract.

The Scotsman newspaper ran an admirably frank - and factually accurate - piece by one of its columnists in 2003, (mildly) criticising Simon Wessely for the detrimental impact he has had on ME research in the UK. It received an enthusiastic response from readers, and many supportive letters were published - but perhaps because of this enthusiastic response Wessely huffed and puffed, threatening the paper with all sorts of reprisals. The result was that the columnist was sacked and the article in question was pulled from the Scotsman's website.

In it's place you can now read an article by Wessely himself, talking about how hard he and his colleagues are working to understand this illness and how it is the belligerent patients who criticise him that are holding up progress.

That's the reality of what we're up against. Remind anyone of 1984?

 

[Chrisb]

The result was that the columnist was sacked and the article in question was pulled from the Scotsman's website.

It is probably fair to say that the writer in question probably had more influential acquaintances, although not necessarily in the field of health, than the average journalist-having been married to the former shadow Foreign Secretary, who went on to become Foreign Secretary.

 

[Barry53]

His job is to tell the truth.

HIs job is to tell the truth such that it is going to be heeded by the readers, and if that means telling the truth in stages, as all good education sometimes has to be, then let him get on and do it. If you try and re-educate a resistant public all in one huge hit then that is just foolish. Education has to be effective, else it is nothing.

 

[Stewart]

They seem to get taken seriously in the UK due to having "science" in the title. Whereas in the US such an organization would be widely know for partisan bias, and no one except FOX would be using them as a source.

It suits the purposes of the SMC to present themselves as neutral and unbiased, presenting only "the best scientific evidence and expertise" without any agenda. And it suits the purposes of UK journalists to take these claims at face value and refrain from looking too closely at how biased the SMC actually is.

 

[Skycloud]

The DM article is what it is, and our job is to use it. I could criticise it, but I think I can use it and that's a positive for me.

I hope NICE are feeling the oxygen of this article and David Tuller's letter flowing into their anaerobic conclave.

 

[Snow Leopard]

As a reminder, Jerome Burne also wrote these articles :
ME: The truth about exercise and CBT
https://www.hippocraticpost.com/heart-lung/statins-critics-shouldnt-silenced/

The serious trust deficiency afflicting medical advice and what to do about it
http://healthinsightuk.org/2016/10/...cting-medical-advice-and-what-to-do-about-it/

(The DM article really makes Simon Wessely look like a morron with his "nothing to see here, move along".)

Those articles are much better than the one that turned up in the Daily Mail, which reads more like a standard tabloid scandal article. Reinforces my belief that it is the Daily Mail that is the problem...

 

[Marco]

Whereas in the US such an organization would be widely know for partisan bias, and no one except FOX would be using them as a source.

If their partisan bias was well known I doubt FOX would be inclined to use as source an organisation whose director was a 'former leading member of the Revolutionary Communist Party' - despite sharing the name :

https://en.wikipedia.org/wiki/Fiona_Fox_(press_officer)

 

[charles shepherd]

Something I should point out is that, from my limited understanding, headlines are often written by editors, not the writers. Its about catching reader attention, the informing is what should be in the details.

Correct…...

And this results in a continuing problem whenever a journalist writes a (good or bad) news item or feature about ME/CFS

The hacks who write the headlines are there to hype up the article and make people want to read it - that is what they are paid to do - even if the headline may not accurately reflect what is down below!

This is partly why it is going to take a long time banging away at the newspaper sub editor brick wall (which we do) to try and eradicate dreadful headlines such as 'Yuppie flu is all in the mind' for psychiatric research and 'Yuppie flu is not all in the mind' for biomedical research papers

The same situation applies to the photos that are used in these items - they are not chosen by the journalist who write the items

CS

 

[lilpink]

In short, sending angry tweets to a writer that's just written an excellent overview of the topic just because he omitted an interview seems massively counterproductive.

Yes. And let's not forget the voice of many US advocates is being ignored despite their impressive credentials. Which is a terrible shame and a real loss.