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

[Londinium]

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.

Janet, I agree with a lot of this. And we share the same goal: that one day, the proponents of the exercise 'therapies' based on deeply flawed trials will be seen as no better than faith healers who berate their unresponsive patients for not believing enough. The question is how we get there, given that in the UK we have been portrayed as aggressive, angry, violent psychopaths. To turn that ship around will take patience and political savvy. It also means, IMHO, celebrating small victories along the way.

And this article, to me, is a victory. I've gone back and re-read it again, to check that I'm not some cowed ME patient begging for scraps from the establishment. To me, it's quietly damning:

• It acknowledges (dumb headline aside) that this is no longer patients vs doctors, but an argument within the scientific community.
• Reanalysis of the data shows PACE inflated results.
• BPS proponents have accused patients of being 'borderline psychopaths' and spent huge sums of money trying to prevent trial data being handed over.
• Claims of abuse were shown to be nonsense during the Tribunal.
• The 'rebuttal' by Simon Wessely is massively unconvincing.
• There is good immunological data looking at cytokines.
• There is a promising trial into Rituximab.

I think that's a pretty good story to have in the national press. And, whilst providing the PACE author's side of the story, I think it's hard for a reader who's reading about ME for the first time to come away thinking anything other than GET is based on some pretty dodgy work and that ME is a physical illness.

Does it include absolutely everything I would like? No, but I would like this journalist to keep investigating, keep writing about ME/CFS and PACE and potential new treatments. We need journalists like him who will at least hear our side of the story (and, from the story's framing, take our side) so I worry that if we are overly critical we risk losing a friendly voice.

(That doesn't mean we don't highlight inconsistencies and errors where they occur - but charm works better than anger. Dismissing any journalist that doesn't instantly write a 10,000 word expose on the barbarism of GET, I fear, gets us further from, not nearer to, our goal).

Let's take our victories where we get them.

 

[Barry53]

I'm glad it's progress. But just for the record, this is not about me or Ron. It's about the SCIENCE and the lack of treatment for suffering patients.

I do fully understand that, believe me, even though I didn't make it very clear. I sort of hinted at it when I said "... Ron's and others' work ...".

 

[Barry53]

I'm glad that some perceive that this is progress. I hope so. Too slow for the suffering patients in the UK!

Up until now though it hasn't even been slow, but utterly stationary since ME-time began. So this rate of UK-progress is much faster than anything we have seen to date, so I'm not going to knock it, because it has the potential to precipitate much faster progress soon, so long as we don't kill it off.

 

[Stewart]

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...

...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

@Janet Dafoe (Rose49) - I'm sure that all of us on this board stand right with you in wanting to see articles along those lines published. The problem is that - in the UK at least - we're still a long, long way from that happening.

As incredible as it seems - and despite the overwhelming evidence - as far as the UK media (and public) are concerned there *is* still a "debate" to be had about the causes of ME/CFS. And while it's understandable that you (and perhaps Ron) are annoyed and frustrated to see yet another article by a British journalist that seems to sit on the fence, the fact is that if Jerome Burne had written an article along the lines you've set out none of our major newspapers would have published it.

In part that's to do with our media's current misguided obsession with ensuring 'balance' in it's coverage of any issue (as you mentioned) and in part it's to do with the fact that the British medical, academic and scientific establishments continue to support the BPS model. Some very important and influential figures from each of these worlds are defending it, and (with a few exceptions) very few influential figures in the UK are speaking out against it. And while the British media are always eager (too eager) to undermine and ridicule authority figures, they have a strange reluctance to question, challenge or criticise 'Established Scientific Wisdom'.

Your Flat Earth analogy was a good one - but perhaps not in the way you meant. Because here in the UK *everyone* in a position of authority (and much of the population) are fully-signed up flat-earthers, fighting a desperate rear-guard action against the very notion of a spherical earth - and anyone who speaks out risks ending up being denounced as a heretic, ridiculed and ostracised. Too many people here don't want to hear the uncomfortable truth, and their leaders are only too happy to keep it from them.

Thankfully though, that is slowly starting to change - we're starting to see articles that provide more even-handed coverage and - in some cases - are openly sceptical about the psychological explanations for ME/CFS. Articles like Jerome's - while it doesn't go as far as any of us would like - play an important part in shifting public perceptions and hastening the day when we will see the "PACE debunked" headline you mentioned.

All this is a very long way of saying that as the mother of a very sick young man you have right to be angry with the sorry state of affairs in the UK - but don't take it out on Jerome. He seems to be a good guy trying to highlight the right issues in a way that the British press will print. As incredible as it may seem to you, this article really is considerably better than most of the reporting that the UK media has produced in recent years. It's a step in the right direction, even if only a small one.

 

[Londinium]

Yes, from many years of experience of giving long detailed interviews to health journalists >> sometimes you are quoted, sometimes you are not. That's life when you talk to the media…...

Yes, and I should have said she finds it even worse when she has to cut an interview with a patient or family member... (thankfully that's not too often).

 

[user9876]

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.

We are still in the dark ages in the UK with some powerful people controlling the agenda and pushing CBT and GET. The newspapers have generally supported them and push their line and claims that patients are violent and harassing the scientists in challenging PACE. So getting an article that is slightly critical of PACE in the national press is a step forward.

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

Not quite but whenever there are climate change stories on the BBC they do insist on balance by having a climate change denier on.

 

[Barry53]

Does it include absolutely everything I would like? No, but I would like this journalist to keep investigating, keep writing about ME/CFS and PACE and potential new treatments. We need journalists like him who will at least hear our side of the story (and, from the story's framing, take our side) so I worry that if we are overly critical we risk losing a friendly voice.

Absolutely spot on.

 

[charles shepherd]

I agree as well. Just because this article is better than others doesn't mean it's good enough. We need to keep calling journalists out or they will keep writing articles like this.

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

 

[Tally]

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.

 

[leela]

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!

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.

@Janet Dafoe (Rose49) I can only hope that the omission is simply because the info he got from the interview with Ron warranted its own article!
Perhaps this is just the preamble to the rest of the story. We pray this is so!

 

[Molly98]

I'm glad it's progress. But just for the record, this is not about me or Ron. It's about the SCIENCE and the lack of treatment for suffering patients.

I can totally get your perspective and it wouldn't for one minute cross my mind that you were thinking about yourself or Ron.

I just had a funny moment of putting myself in your shoes for a moment having just spent several days with many top scientists talking about the biological underpinnings and abnormalities in ME to reading this article, the UK must seem like a different planet, it must just come across as nonsensical and insane, Telly Tubby, or La La land, and it is. It is completely illogical and rediculous.

Don't forget we are a country which gives knighthoods and other orders of the realm to presigeous abusers and the morally corrupt. Most scandals take about 30 to 40 years for the UK media and public to get to grips with, by which time those accountable have usually died.

 

[Esther12]

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.

I don't think that anyone is saying that.

It's important to make waves effectively and usefully by ensuring that the things we say, and the criticisms we make, are reasonable and well informed.

Try and get better coverage in the UK press. See how you do. See how hard it is. Then you'll be in a better position to make a judgement of Jerome Burn's work.

It think that there are problems with the article, and I'm certainly not saying that no criticisms should be made, but no-one should start from the assumption that he was free to just publish whatever he wanted on this topic.

 

[Neunistiva]

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 am not going to thank a journalist for barely doing his job. His job is to tell the truth. And he's getting paid for it. In money, not gratitude.

I think it's been quite enough of scaring patients into submission. If it is indeed true that journalists pulled back because of fear (shame on them), they did so because of lies about patients, not because of what patients actually did.

I also don't know why you are addressing me as if I attacked this journalist. I haven't said a word to him. It was @Janet Dafoe (Rose49), who is not a patient by the way. And she did well to do so.

 

[Esther12]

I think it's been quite enough of scaring patients into submission. If it is indeed true that journalists pulled back because of fear (shame on them), they did so because of lies about patients, not because of what patients actually did.

I think that a lot of UK science reporter's aversion to writing on ME stems from a history of them writing terrible article and then being heavily criticised for that by patients. Then they will tell amusing semi-ficitonalised stories about this to their colleagues, and so on. This is often how stigmatised groups are treated. It's not fair and shouldn't be acceptable, but we can make things worse if we do then unfairly criticise decent work. Particularly in the UK, we face a lot of prejudice, and that does mean that it's particularly important that we all try to be effective and rigorous in the way that we pursue activism. Letting rip at a reporter who didn't write exactly what you wanted might feel good for a moment, but is it likely to make things better or worse for other patients?

 

[Stewart]

I also don't know why you are addressing me as if I attacked this journalist.

Charles was responding specifically to your comment that "We need to keep calling journalists out or they will keep writing articles like this" and making the point that a bit of encouragement and constructive criticism would be a more effective approach.

 

[TiredSam]

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. This is a huge step for the UK, and a sign that M.E. is now a subject that it is possible for journalists to form their own opinion on and get published without being automatically pressured / censored / squashed. Given those conditions, they can now get to the true story, which I of course agree is long and disgracefully overdue.

I have emailed him to say Sam (and others) is appreciative.

Thanks.

 

[AndyPR]

I'm not a fan of the Daily Mail and probably never will be, but we do need to judge this article on the basis of its content. I'm delighted to see the article and I am pleased it's is in a high circulation paper.

I am a little intrigued that a new (to me) concept has arisen in this thread -

*** Shooting the message because you don't like the messenger. ***

The concept has developed further I'm afraid, it seems some people would like to shoot the author of the message because they wanted him to write a message that wouldn't have been passed on by the messenger in the first place.

 

[alex3619]

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.

 

[Tally]

it seems some people would like to shoot the author of the message because they wanted him to write a message that wouldn't have been passed on by the messenger in the first place.

The author is just fine. Unharmed. It's our lives that have been destroyed.

 

[AndyPR]

The author is just fine. Unharmed. It's our lives that have been destroyed.

I know, mine too, but I'm realistic enough to know that this article represents an imperfect step forward for the ME situation in the UK, so I'm thankful for it while still wanting more.