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

[Binkie4]

Re: photo of the DM article above

Thank you to my husband for going out to buy a copy and then holding it up while I took a shaky photo with my phone while crashed in bed.

 

[wdb]

500,000? Just where are they getting these figures from? There's no way that many people have ME, chronic fatigue maybe but not ME.

That must include all the GETSET Julies who are just a bit worn out from working long hours, staying up late and sleeping in at the weekends.

 

[Janet Dafoe]

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.

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

 

[Skycloud]

Hi @Janet Dafoe (Rose49) Would you mind breaking your post up into short paragraphs for those of us that find large blocks of text difficult to read?

 

[A.B.]

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.

There is a lot of work to do in regards to informing society about the disease. The IOM report was very good in finally making it clear that this is a biological disease (while admittedly being somewhat flawed). It included the recommendation to update the report within 5 years. I don't think we need to wait that long, since many interesting findings have been made in the meantime. A weakness of the IOM report was also the lack of treatment recommendations. Nobody knows how treat ME/CFS but it should be possible to come up with useful guidelines for treating certain symptoms and identifying and treating common comorbidities and aspects of the illness (for example, recognizing and treating hypovolemia with salt water, or recognizing PEM and how to help patients manage it in their daily lives and in regards to school or work). I think many doctors would embrace the new paradigm if they could finally do something useful for patients. Lucinda Bateman gave a good talk about doctor education on ME/CFS.

 

[Molly98]

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

9

Janet I so agree with everything you say. You are 100% right. That is what should happen, that is the truth and it should be written and exposed.

But here in the UK things are so backward and we are abused and mistreated so much for so long, that crumbs and a so called balanced view that does not completely tow the BPS science media center line seems like a cause for celebration and a small victory. We are like abuse victims, grateful to be given crumbs and to not be mistreated and misrepresented for once.

IV Saline, not a chance. There is no help, no treatment, no further investigations, it's CBT and GET or just being left to rot on your own and this is perceived then as choosing to stay ill. We are treated with contempt and disrespect and redicule by many medical professionals and public, so it was actually a pleasant surprise not to be.

It is wrong, so wrong that things should be this way.

I had not realized this was the journalist that had interviewed Ron and feel very disappointed now that what Ron said was not in the article. I hope he puts this in another article.

I am still hoping that someday soon some UK investigative journalist will have the morals and courage to expose the whole shocking truth of this scandal because that is what it is.

 

[Forbin]

500,000? Just where are they getting these figures from? There's no way that many people have ME, chronic fatigue maybe but not ME.

Yeah, I noticed this. This figure I see most often is 250,000 in the UK. I think I've also seen 10,000 in Ireland, but I'm not sure if that's the most accepted figure.

 

[trishrhymes]

Dear Janet, I love you for your passion, and I think you are absolutely right.

In defence of the journalist, I gather he's a freelance and guess if he wrote the story as you and I want him to, he wouldn't find any newspaper in the UK who would publish it.

For the UK, this article is progress. Of course we need more. Maybe next time he writes about ME he will be able to go a step further. I hope he is able to write another article based on what Ron told him.

My thanks to Ron for taking the time to try to get the truth across. At least that journalist has heard it and it will I hope influence what he writes in future.

 

[charles shepherd]

could even have been an editorial decision.

Simple answer is that I do not know

JB covered a lot of ground in this article and the quotes from medics that were used were all fairly short

CS

 

[charles shepherd]

Yeah, I noticed this. This figure I see most often is 250,000 in the UK. I think I've also seen 10,000 in Ireland, but I'm not sure if that's the most accepted figure.

I don't know why JB used this figure - it is not one that normally appears in the press

The best estimate that most of us currently use is a prevalence rate of somewhere between 0.2% and 0.4% of the population - or possibly around 250,000 adults and children if you want an upper limit…..

CS

 

[Neunistiva]

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.

 

[arewenearlythereyet]

its hard to hear @Janet Dafoe (Rose49) but you are right it isn't enough ......this is a long journey though...the situation here is very entrenched and pwme are highly stigmatised through years of misinformation and neglect.

The tide is hopefully turning and we can still celebrate a little I think. We are at the top of the mountain and the snowball has been set loose.

 

[Janet Dafoe]

There is a lot of work to do in regards to informing society about the disease. The IOM report was very good in finally making it clear that this is a biological disease (while admittedly being somewhat flawed). It included the recommendation to update the report within 5 years. I don't think we need to wait that long, since many interesting findings have been made in the meantime. A weakness of the IOM report was also the lack of treatment recommendations. Nobody knows how treat ME/CFS but it should be possible to come up with useful guidelines for treating certain symptoms and identifying and treating common comorbidities and aspects of the illness (for example, recognizing and treating hypovolemia with salt water, or recognizing PEM and how to help patients manage it in their daily lives and in regards to school or work). I think many doctors would embrace the new paradigm if they could finally do something useful for patients. Lucinda Bateman gave a good talk about doctor education on ME/CFS.

The IOM committee on ME/CFS had a specific charge. They had to stay within that charge or it would be taken out. Treatments weren't part of the charge. They weren't allowed to address that. Hopefully the next one will.

 

[charles shepherd]

Quite. Pure speculation of course, but the article may have been offered to some far higher quality papers we'd have preferred to see it in but they didn't want it, in which case it's a pleasant surprise to see that there is another use for the Daily Mail besides wiping my dog's arse with.

If my recall is correct, his previous articles on ME/CFS appeared in the Daily Mail

And he writes on other health matters for the DM

So I suspect that this was either commissioned by the DM (who do take an interest in ME/CFS) or he offered it to the DM and it was accepted

From his website:

Jerome Burne
I’ve been a health journalist for twenty years and written for most of the national newspapers and a variety of magazines. Before that I edited a massive tome called Chronicle of the World and before that I was co-editor of Time Out in the mid-1980’s.

In recent years I written mainly for the Daily Mail. I’ve also contributed regularly to Reader’s Digest and occasionally to the Times Literary Supplement.

This year (2012) I won the award in the category Medical Science Explained from the Medical Journalist’s Association. I was also runner up in the category Best National Newspaper Feature

I’m married, have five children and live in London. I’m pretty healthy, swim regularly and find my work endlessly fascinating.

 

[Jonathan Edwards]

thats unfortunate - possibly edited out Dr Ron Davis? or saved it for a follow up article? @Jonathan Edwards @charles shepherd may have some knowledge?

My understanding is that Jerome Burne never had any agenda to cover recent scientific work. I think there may have been a bit of a misunderstanding about the agenda at the IiME session. As I understand it Jerome is interested in the human side of the story in terms of trust between doctors and patients. The story he wrote is very UK based and rightly so because we are the centre of the problem in these terms.

Jerome is not in a position to judge the value of any biochemical, immune or virus science going on. I talked to him at considerable length about the science agenda but I did not think it was sensible to promote any particular angle. The truth is we have some good epidemiology from the past, a lot of negative data on viruses and cytokines and some very early suggestions of abnormalities from new approaches so far not confirmed. The Daily Mail reader will not know what to make of any of that. He was obviously already interested in the rituximab studies in Norway. He got a bit confused about my role but it does not matter.

I think the story he focuses on does matter. And I think he has made a very significant step in getting the right people informed about the crucial issues. This is the first time I have seen a newspaper article mention the FOI tribunal fiasco about the witness having to admit there was no evidence of harassment. I think the balanced tone is exactly right for the readers who matter. A hectoring tone would have just raised eyebrows and a groan. The readers who matter here will be the medical and psychology professionals and students who will get shown the article by patients, family and friends. There is enough there for them to say 'hmm, interesting, what is really going on here? There is also enough to strike a chord on the trust issue. Basically what we need next is for Cochrane and NICE to see sense. This is the way to get there.

Jerome is no fool, he understands the issues for patients and his role in all this very well, but he keeps to what he is good at, and I think that is all to the good. I think it is a pity to misread what he is doing.

 

[charles shepherd]

Part of my spouse's job is to write copy that explains scientific concepts to a lay audience. As part of that she'll often have to interview multiple scientists and choose which quotes best give a broad overview of the topic in the limited space available. That means some interviews won't be used: that doesn't mean she disagrees with their views or disregards their work - it's just a necessary part of the work of any professional writer.

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…...

This happened only a week or so ago with Sarah Knapton and her research item in the Daily Telegraph - I gave her a lot of background on immune dysfunction and neuroinflammation in ME/CFS and emailed some MEA quotes for publication

I got a very nice 'thank you' note from Sarah but nothing from the MEA appeared in print……

DT article on the new Montoya research:

http://www.telegraph.co.uk/science/...ory-disease-blood-test-could-easily-diagnose/

CS

 

[Barry53]

Hi @Janet Dafoe (Rose49),

Really appreciate your dismay, but in truth it is the very dismay that people in the UK are all too familiar with. Although this article may not be the full turnaround we all yearn for in the UK mainstream media, it is nonetheless one of the boldest and best so far. Rome wasn't built in a day and all that. To go from where we have been all these decades, to where you would like us to be, in one fell swoop, was just never going to happen. But this article takes us one heck of a lot closer. And for JB it is actually a pretty brave move on his part.

Your's and Ron's time will come I'm sure here in the UK, and I would not be surprised if JB intends this article to pave the way for more, as the public mood hopefully becomes more responsive. I suspect he feels the UK public perception of ME is simply not receptive yet to sane debate on real science that is underway - and I would agree with that. The public's "all in the mind" prejudice first has to be addressed, else articles about Ron's and others' work will just not click with Joe Public.

 

[Janet Dafoe]

FYI. Ron was contacted by Richard Simpson recently, well after the IiME conference, and asked if he would be willing to be contacted by Jerome Burne by phone for an interview. I facilitated that happening. That is the interview I was referring to, not the interview in London (was that Jerome Burne too? I don't know.)

I was not advocating for a "hectoring tone".

I wonder who the "readers who matter" are? I suggest that it's ALL the readers!

It would not have been necessary for him to go into the details of the science.

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

 

[Esther12]

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

Those articles are sitting in file drawer, with editors refusing to publish them! Best wishes to everyone trying to get those articles published in a British paper, but I think it's wrong to describe Jerome's work as 'contemptible'. He's written a couple of decent blogs on this too, seems to want to try to get good coverage into the UK papers, and I don't see anyone else doing a better job at the moment. It's always worth pointing out where things can be improved, but it's worth doing that in a way that understands and reflects that difficult position the few decent UK science journalists are in when it comes to covering PACE/CFS/etc.

 

[Janet Dafoe]

Your's and Ron's time will come I'm sure here in the UK

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.