ME: bitterest row yet in a long saga

[snowathlete]

In the UK at the moment we have "I'm a celebrity, get me out of here" (filmed in Australia I believe). They have all sorts of not-real celebrities on there. I'd like to see Wessely on it. Love to see him eat ostrich anus, with Ant and Dec laughing in the background, and me laughing at home watching it on tv."

 

[Shell]

Of course, all the while Wessely is in the firing line being misquoted and arming himself with fresh barbs for the next SMC 'spam-all-news-outlets-from-the-bbc-to-the-guardian-bonanza', White is busy setting up his latest GET trial. Who knows what Chalder and Sharpe are up to? Wessely could now be to ME/CFS is what Cameron is to politics - a PR man who likely has very little practical involvement. Just gets his name on the album credits, does the interviews and picks up that royalty cheque, before doing a puff piece or two for the spectator (hmm, that right wing rag..he actually wrote for)

If I had to choose between justice and a cure, I'd take the cure. The possibility remains that we could all get screwed by Professor Hooper's pride. I still respect him because he puts himself on and in the firing line consistently, but one too many misquotes and a person with the press in their hands can make a quest for justice look like the vendetta of a bitter rival. If anyone thinks I'm being harsh, you ought to read Alfred Lord Tennyson's Charge of the Light Brigade and find out what happens when 'good men' are set on a bad path. They might fight valiantly, but it ends in their demise. When the press reduce you to David Icke, ain't nothing gonna save you but a Lizard Army coup d'etat.

If you are actually making a case against someone, I'm not actually so certain it's the smartest idea to fire every barb the second you uncover it either. Sometimes you might think a boxer has taken a bad blow, when they planned to take it and rode it out to minimise the damage. The sucker punch is the unseen or unblock-able.

Also what's done is done, there's still time to put pressure on White's latest study since he still hasn't recruited enough patients to get it going yet. This, is now, as they say.

The fact that non-psychiatric research is getting done, the ME conferences are getting numerous and bigger, and that journalists are prepared to cover more of the story (Sanchez Manning, Caroline Lavender, Sonia Poulton) means that things are moving along, gains are being made.

In the meantime there are some promising studies going on around the world, they don't necessarily promise to be the silver bullet for fixing everything, but are important steps on a long and underfunded road. I wonder how ME/CFS would be right now if some of the energy poured into Wessely and pals was set to supporting current research projects. The sooner they get done, the sooner we'll get get the substantial evidence we're looking for.

And trust me, I'm no saint here, I'm am talking to myself as much as anyone else. I've had the Hooper pom-poms out in the past because it satisfied my resentment of the medical establishment and nursed the frustration I feel due to the loss of my ability. But I'm getting older, and I'm bored of being angry. My soul wants to win, and where there is life, there is hope.

I think you are right. I'm no saint either, but I've read a lot of saint-stuff and one thing they have in common is that they knew when to walk away and take their Boss's advice of "shaking the dust from their sandals".

Is Wessley really is washing his hands in Pilate's bowl then we should ignore him from now on.

I joined Pheonix because I wanted to get on top of all the good research, and sift out the stuff that was badly done. I have awful memory, concentration and reading problems these days. I need something that explains it simply. I don't trust the British Press at all and reading the comments under the Indi piece was soul destroying; partly because some of them were better written and better researched than the paid journo managed and partly because of people who kept trying to force ignorant and nasty commenters to understand something they had made it very clear they had no intention of trying to understand.

Walking away is not a sign of defeat. It is often an act of wisdom.

Thanks for what you wrote Stukindawski - I feel a little better about it all now.

And @firebird. Thanks to you too. But as you say, I can'r bring myself to read any more Wesslyisms. I'll walk away now.

 

[Firestormm]

If I had to choose between justice and a cure, I'd take the cure. The possibility remains that we could all get screwed by Professor Hooper's pride. I still respect him because he puts himself on and in the firing line consistently, but one too many misquotes and a person with the press in their hands can make a quest for justice look like the vendetta of a bitter rival. If anyone thinks I'm being harsh, you ought to read Alfred Lord Tennyson's Charge of the Light Brigade and find out what happens when 'good men' are set on a bad path. They might fight valiantly, but it ends in their demise. When the press reduce you to David Icke, ain't nothing gonna save you but a Lizard Army coup d'etat.

If you are actually making a case against someone, I'm not actually so certain it's the smartest idea to fire every barb the second you uncover it either. Sometimes you might think a boxer has taken a bad blow, when they planned to take it and rode it out to minimise the damage. The sucker punch is the unseen or unblock-able.

Also what's done is done, there's still time to put pressure on White's latest study since he still hasn't recruited enough patients to get it going yet. This, is now, as they say.

Just wanted to add that what appears from ME Action UK cannot all be subscribed to Prof. Hooper (much as I share you general concerns. There is an association that prevails and whilst much of what is published, does carry his moniker, quite a deal of the 'quick response' misquotes and pronouncements - do not. Margaret Williams is not Prof. Hooper. Although there is an applied 'guilt by association' and I'm as guilty as the next man.

http://forums.phoenixrising.me/inde...y-says-he-is-misunderstood.20654/#post-314268

 

[Enid]

But he has fought decades before us - so let's respect Prof Hooper and Margaret Williams who set the recognition of ME as not in all in the mind,with an enormous amount of dedication and with a very few others brought things through to the present situation in Dr Shepherd's Telegraph article.

 

[David Egan]

You will need to take some considerable time to read through our web site www.cfs-ireland.com
It addresses the points you make. And it goes further and presents the top 20 ME / CFS clinics in the world, clinics which have a few thousand recoveries from ME / CFS. And have medical evidence to support this. In many cases people arrived in wheelchairs to these clinics.

As regards trying to state what ME / CFS actually is, there are a myriad of false understandings presented as truthful, and thus all kinds of explanations to confuse one. It is only by carefully deconstructing ME / CFS into it's constituent parts, that is it's biological abnormalities and dysfunctions and infections, through thorough diagnostic tests, that one can state exactly what exactly ME / CFS is. Western culture is obsessed with easy quick solutions and superficiality, and lacks thoroughness, lacks depth, lacks the rigour to dig for precision, and this unfortunately applies to diagnosis of certain illnesses. The easy and superficial way has been the way of wessely and others. Malcolm Hooper is necessary in order to balance the debate in Britain, though his contributions should not be taken for granted or taken lightly.

In relation to your points regarding research and the energy expended fighting wessely and others, we have the following on our web site
"There have been several serious consequences for ME / CFS patients arising from this hijacking of the illness by certain psychiatrists. The denial of proper medical diagnosis and identification of serious biological abnormalities and dysfunctions is one, denial of proper medical treatment is another, and the denial of research funding by governments and national health institutes and research institutes worldwide into the biological and biomedical aspects of ME / CFS is another. By calling ME / CFS an imaginary illness which was all in the mind, these psychiatrists have ruined millions of lives. One research institute in the USA embezzled funds which were designated for ME / CFS research in the 1990's based on the false psychiatric premise that it was an imaginary illness. In the case of the denial of research funding by governments and national health institutes and research institutes worldwide, it is estimated that certain psychiatrists have been responsible for denying $600 million in research funding into ME / CFS over 20 years. This $600 million could have made a huge difference to scientific research and brought the world much closer to understanding the structure of causation of the illness and it's biological dynamics and led to the development of medical drugs to treat the illness."

As regards comparisons with David Icke, I find this silly and unwarranted, as my heroes and inspiration are the scientific champions such as Christopher Hitchens (RIP), Richard Dawkins, Thomas Jefferson, Lincoln and the Enlightenment philosophers, and it is their line of thinking which is expressed in the web site www.cfs-ireland.com

 

[David Egan]

You will need to take some considerable time to read through our web site www.cfs-ireland.com
It addresses the points you make. And it goes further and presents the top 20 ME / CFS clinics in the world, clinics which have a few thousand recoveries from ME / CFS. And have medical evidence to support this. In many cases people arrived in wheelchairs to these clinics.

As regards trying to state what ME / CFS actually is, there are a myriad of false understandings presented as truthful, and thus all kinds of explanations to confuse one. It is only by carefully deconstructing ME / CFS into it's constituent parts, that is it's biological abnormalities and dysfunctions and infections, through thorough diagnostic tests, that one can state exactly what exactly ME / CFS is. Western culture is obsessed with easy quick solutions and superficiality and lacks thoroughness, lacks depth, and this unfortunately applies to diagnosis of certain illnesses. The easy way has been the way of wessely and others.

In relation to research we have the following on our web site
"There have been several serious consequences for ME / CFS patients arising from this hijacking of the illness by certain psychiatrists. The denial of proper medical diagnosis and identification of serious biological abnormalities and dysfunctions is one, denial of proper medical treatment is another, and the denial of research funding by governments and national health institutes and research institutes worldwide into the biological and biomedical aspects of ME / CFS is another. By calling ME / CFS an imaginary illness which was all in the mind, these psychiatrists have ruined millions of lives. One research institute in the USA embezzled funds which were designated for ME / CFS research in the 1990's based on the false psychiatric premise that it was an imaginary illness. In the case of the denial of research funding by governments and national health institutes and research institutes worldwide, it is estimated that certain psychiatrists have been responsible for denying $600 million in research funding into ME / CFS over 20 years. This $600 million could have made a huge difference to scientific research and brought the world much closer to understanding the structure of causation of the illness and it's biological dynamics and led to the development of medical drugs to treat the illness."

As regards comparisons with David Icke, I find this silly and unwarranted, as my heroes and inspiration are the scientific champions such as Christopher Hitchens (RIP) and Richard Dawkins, Thomas Jefferson, Lincoln and the Enlightenment philosophers, and it is their line of thinking which is expressed in the web site www.cfs-ireland.com

 

[Stukindawski]

There was no direct comparison with David Icke. David Icke is a universal meme for someone who lacks credibility. If Hooper/Williams et al, make too many misquotes and the SMC/SAS release one or more articles across the media spectrum (of which they have much wider access to do so than either Hooper or Shepard), the risk to Hooper's credibility is far greater than Wessely with a single article in one media outlet only.

If the press takes sides, only the absolute proof of Wessely with his hands in the biscuit tin is going turn things around. In the same way that, the only way people will listen to David Icke is if the lizardmen show up in broad daylight and take over the government for all to see. Form dictates that anything remotely right leaning will side with Wessely, and The Guardian/Observer also has form for taking that side, despite Geogre Monbiot's piece on Sense About Science back in 2003. Some posit this is due to Unum connections with the paper.

I don't actually see Prof Hooper in that manner, it is more a comment on how the press rather offensively at times, draws the line between what is colloquially deemed crazy and not crazy. This kind of journalism goes right up to the broadsheets.

Another analogy is that, Prof Hooper is riding an Xwing on the Death Star trench run, he has one shot, to hit the exhaust port and save the Rebellion from the Empire. Wessely on the other hand, has squadrons of Tie Fighters, countless fleets and garrison's stretching across the galaxy, a Super Star Destroyer and the seat of power at Coruscant.

As we have seen, Wessely hasn't exactly been perfectly deft in his handling of ME/CFS over the years, but he retains both influence and status despite that fact. Prof Hooper conversely has been asked repeatedly to write articles for various media publications, and just before they were due to be published, they were pulled at the last minute. If you only get the occasional shot, it has to be better than good.

The fact that Professor Hooper has been so consistently shut out of the press, no doubt in the face of the pervasive press management on this issue, also means that his experience in the press is greatly limited. Sense About Science and the Science Media Centre are drilled in press management and have extensive resources and contacts.

I'm all for people rooting out the irreparable damage the fallacious psychosomatic theory has done to ME/CFS patients - but, our first duty is to get done that which leads us closer to biomarkers and ultimately cures. Quality biomarkers will ultimately destroy the 'Wessely School' theory. Everything else follows.

 

[justinreilly]

Hi David. Welcome to the forum. Sorry for being a bit brusque, but I'm going off-line.

I just started reading your post, and got to this:

" This is backed up by 5,000 scientific research papers proving this is a biological and biomedical illness."

That's one of those claims which I see floating around the internet, but I've never seen anyone show that it's true. I've never found one high quality and replicated study which could be truly said to 'prove' that 'CFS' is a 'biomedical' illness (pardon the scare quotes... all are simple words that can hide complicated problems). Just thought I'd post my initial though.

@ others about a CFS debate:

If it was a two hour debate, I expect Wessely would come off looking good. Six hours, and there might be enough time to explain the problems with his work. Generally though, other researcher tend to focus on their own work, rather than trying to pick apart the work of others: I think it would be a boring debate.

I don't think it would be boring. And I don't think that Wessely would come off looking good in any sort of debate longer than 10 minutes with Hooper.

Komoroff says the 4 & 5,000 papers figure, as you might know, but I have heard that that is an overestimate. I haven't counted myself. I do agree with you that we should be as accurate as possible. I am a big fan of Hooper though. I don't think he makes many major errors, and what other scientists do we have coming to our aid to attack Wessely. It's usually his sole voice. The other scientists should be speaking up more.

The fact that no ONE paper, taken on its own proves that ME is physical and not psychological, is not persuasive since if you consider the TOTALITY of research it is proven that ME is physical and not psychological. Saying the former, without noting the latter could harm us since it might mislead people to think that ME hasn't been proven to be physical.

 

[PhoenixDown]

Komoroff says the 4 & 5,000 papers figure, as you might know, but I have heard that that is an overestimate. I haven't counted myself. I do agree with you that we should be as accurate as possible. I am a big fan of Hooper though.

I'm not having a go at Hooper but that 4000 or 5000 ME researcher paper figure, has always bothered me. Sure there might be that many papers out there but how many of them are good? How many of them even used a decent selection criteria, let alone objective outcome measures?

It's probably best not to use that number in advocacy since some of those papers are likely to have flaws.

Edit: Not to mention how many of them were replicated.

 

[David Egan]

I agree with many of the fine contributors here and thank them for their insights. However, I find it very odd that the British Press would side with Wessely against Hooper. This is very strange indeed. Maybe our British friends could provide us all with some insights into why this is, and why Britain ?

Maybe there is 'Hooper fatigue' among British journalists and editors. I propose a different way of resolving this perplexing problem for the benefit of us all (ME / CFS patients and carers).

1. Encourage Malcolm Hooper to take a break from the British Press for 16 months.
2. Get the following highly distinguished people to write articles about ME / CFS in the British Press
- Professor Anthony Komaroff of Harvard Medical School, Harvard University
- Dr. Luc Montagnier (won the Nobel prize for discovering the AIDS virus). He is sympathetic to ME / CFS patients
- Dr. Harvey Alter (who discovered the hepatitis C virus). He is sympathetic to ME / CFS patients.
- Dr. Ian Lipkin (one of the top virologists in the world). He is sympathetic to ME / CFS patients.
- Dr. Paul Cheney, one of the best known ME / CFS doctors and researchers in the world
- Dr. Daniel Peterson, one of the best known ME / CFS doctors and researchers in the world

And ask these doctors to quote Hooper and use some of Hooper's stuff in their writings, thus indirectly validating Hooper. The above individuals command a high level of respect worldwide, in the scientific community and medical community. They would be ideal candidates for writing in the British Press. And the British Press has historically been very subservient to highly distinguished people, especially those who are distinguished and respected on a global scale. Furthermore the doctors on the list above are well able to write and defend their position against any attacks from Wessely, White, Sharpe, etc.

As regards biomarkers, well 5,000 research papers have provided us with some biomarkers for several of the abnormalities and dysfunctions in ME / CFS. I have tried to gather and collate these into a coherent diagnostic protocol for use in our proposed ME / CFS clinic - http://www.cfs-ireland.com/structure.htm#7

I've also amended the scientific section on our web site to corroborate the claim of 5,000 research papers proving biological and biomedical factors in the illness - http://www.cfs-ireland.com/scientific.htm
Medical and Scientific Databases
- Query of multiple databases using term 'chronic fatigue syndrome'
- Query of multiple databases using term 'myalgic encephalomyelitis'
- Query of multiple databases using term 'chronic fatigue and immune dysfunction syndrome'
- Query of multiple databases using term 'post-viral fatigue syndrome'

 

[David Egan]

Wesselys' little boys and girls have published a letter in the Independent newspaper in Britain defending Wessely and psychiatric control of ME / CFS diagnosis and treatment. Such a collection of utter f**ls blinded by their own ignorance and arrogance.

"Chronic fatigue syndrome/ME is a debilitating condition affecting some 1 per cent of the UK population ("ME: bitterest row yet in a long saga", 25 November). This serious illness needs improved treatments and care, and research is central to making this happen. So it is with sadness that we read in The Independent on Sundayreports of allegations made against Simon Wessely, one of the few UK clinicians with a specialist interest in treating CFS/ME and someone who has done pioneering research in the field. Such harassment risks undermining research, preventing the development of new treatments and discouraging specialist clinicians from entering the field. We fear that this may have resulted in patients not receiving the best treatments or care – staying ill for longer and not being able to live life to the full.
Dr Esther Crawley
University of Bristol
Professor Michael Sharpe, University of Oxford
Professor Peter White, Queen Mary University of London
Dr Esther Crawley, Reader in Child Health, University of Bristol
Professor Stephen Holgate CBE, MRC Clinical Professor of Immunopharmacology, University of Southampton
Professor Rona Moss-Morris, Head of Health Psychology, King's College London
Dr Charlotte Feinmann, Reader, UCL
Professor Hugo Critchley, Chair in Psychiatry, Brighton and Sussex Medical School
Dr Brian Angus, Reader in Infectious Diseases, Nuffield Department of Medicine, University of Oxford
Dr Steven Reid, Clinical Director for Psychological Medicine, Central and North West London NHS Foundation Trust
Professor Patrick Doherty, Professor of Rehabilitation, York St John University
Professor Paul Little, Professor of Primary Care Research, University of Southampton
Dr Maurice Murphy, HIV Consultant, Barts Health NHS Trust
Professor Tim Peto, Consultant in Infectious Diseases and General Medicine, Nuffield Department of Medicine, University of Oxford
Professor Sir Mansel Aylward, Chair, Public Health Wales, Cardiff University
Dr Alastair Miller, Consultant Physician, Royal Liverpool University Hospital
Professor Diane Cox, Professor of Occupational Therapy, University of Cumbria
Professor Jonathan Sterne, Professor of Medical Statistics and Epidemiology, University of Bristol
Dr Margaret May, Reader in Medical Statistics, University of Bristol
Professor George Davey-Smith, Professor of Clinical Epidemiology, University of Bristol
Dr Jade Thai, Senior Research Fellow, University of Bristol
Dr Gabrielle Murphy, Clinical Lead Physician, Fatigue Service, Royal Free London NHS Foundation Trust
Dr Hazel O'Dowd, Consultant Clinical Psychologist and CFS/ME Team Leader, Frenchay Hospital Bristol
Dr Brian Marien, Director, Positive Health
Professor Willie Hamilton, Professor of Primary Care Diagnostics, University of Exeter
Dr Selwyn Richards, Consultant Rheumatologist, Poole Hospital NHS Trust
Professor Alison Wearden, Professor of Health Psychology, University of Manchester
Professor Trudie Chalder, Department of Psychological Medicine, King's College London."

Would anybody on this forum and in the many ME / CFS organisations be interested in contacting contact Hooper and ask him to hold his fire and get him to collaborate with the following people
- Professor Anthony Komaroff of Harvard Medical School, Harvard University
- Dr. Luc Montagnier (won the Nobel prize for discovering the AIDS virus). He is sympathetic to ME / CFS patients
- Dr. Harvey Alter (who discovered the hepatitis C virus). He is sympathetic to ME / CFS patients.
- Dr. Ian Lipkin (one of the top virologists in the world). He is sympathetic to ME / CFS patients.
- Dr. Paul Cheney, one of the best known ME / CFS doctors and researchers in the world
- Dr. Daniel Peterson, one of the best known ME / CFS doctors and researchers in the world
- Dr. Enlander in New York
- Dr. Nancy Klimas
- Dr. Weir
- Dr. Jose Montoya, Stanford University

on a letter and signed by all these individuals. And sent to the Independent, The Times, The Guardian, The Sun, The Daily Mirror, The Daily Mail. This would bring closure to this saga in the British Press. And end it once and for all. Anybody on this forum / this web site interested in making relevant contacts and bringing this together ? It would make a big difference.

 

[taniaaust1]

I'm not having a go at Hooper but that 4000 or 5000 ME researcher paper figure, has always bothered me. Sure there might be that many papers out there but how many of them are good? How many of them even used a decent selection criteria, let alone objective outcome measures?

It's probably best not to use that number in advocacy since some of those papers are likely to have flaws.

Edit: Not to mention how many of them were replicated.

Im been investigating what has made other illnesses advocacy successful. Thou Im all for truth and dont agree with twisting figures.. I'd like to say that with MS advocacy.. one of the reasons their advocacy was so successful, is they told lies of the exaggeration type
eg the very inflated MS population rate used (it may of been as much as 10% higher then the real rate) in their advocacy (that was even thou they knew the true figure as they'd done a study on it but they still kept on quoting, highly inflated rates). They used inflated figures etc in thier advocacy and when calling for gov funding etc.

Maybe we thou shouldnt even be questioning things as being untrue when we in fact dont know if they are or not due to not having counted the papers ourselves. Our own questioning when we in fact dont know, may be undermining the advovacy efforts into this illness. (If you see a mistake probably best to email whoever did the article then point it out in these public forums where anything may be turned and twisted against us by those who want to have ME/CFS in the psych realm.. where mistakes may be used to discredit our supporters.

I think the ME/CFS community is often shooting itself in the foot when the other side of quite experienced players is playing a very smart game. We all need to be smarter in this battle.

 

[taniaaust1]

[

I agree with many of the fine contributors here and thank them for their insights. However, I find it very odd that the British Press would side with Wessely against Hooper. This is very strange indeed. Maybe our British friends could provide us all with some insights into why this is, and why Britain ?

Hasnt Wessely got ties to the group which control the media on illnesses in Britian..the media centre or whatever it is? Wasnt he on its board or something like that??? The board which controls health media there.
That completely explains why Hooper cant get British Press doing interviews yet Wessely does. If you research the British situation more.. you will understand it.. the media there is CONTROLLED by the media centre.

Wessely was also responsible for gov decisions on ME/CFS. We are talking a about a guy who carries much power there who has worked closely with their gov when it comes to ME/CFS and health, he helped form the gov guidelines.. and hence is recognised as the top ME/CFS person. Their gov see him as more important then Cheney and all those others you mentioned there as to them.. he's the world leader in the field.

Maybe there is 'Hooper fatigue' among British journalists and editors.

If anything, they should have Wessely Fatigue as that guy for the past 10 years or so has just been saying the same things over and over again.

1. Encourage Malcolm Hooper to take a break from the British Press for 16 months.

That would be extremely bad.. as he's needed to keep fighting the Wessely school. Take him away and things could go very downhill very fast with the others having completely free rein to be saying what they like, medically uncontended

2. Get the following highly distinguished people to write articles about ME / CFS in the British Press

That isnt possible in the British Press as it needs to have their media centre approval (their media regulatory body approval. who tends to just support psych views). Due to all that.. things moving forward "in that way" in England havent much hope at all. The fight in England needs to be done differently then throu media due to the blocks there on that.

 

[David Egan]

You completely misunderstood what I said in my second message. I proposed that Hooper hold his fire and collaborate with these other doctors and researchers on a letter of reply to these British newspapers.
I am not aware of any person such as Wessely controlling the Press in Britain, but if you can supply hard evidence of this it would be appreciated. Its supposed to a free press, a democracy, not a dictatorship. Wessely was let advise the government because he built up a public profile and was not challenged by other people including doctors and researchers who were too cowardly to do it. And nobody had the initiative and the b***s to get all these doctors and researchers to collaborate together to attack Wesselys' ideas in the media. Though my proposal intends to change this situation.
You say "If anything, they should have Wessely Fatigue", well they don't have wessely fatigue as they continue to indulge him and his accomplices.
I am certain that a letter of reply signed by Hooper and these other top doctors and researchers in the field of ME / CFS would start to change things in Britain. One needs to kick start a process in order to get it going. It cannot be a rushed job, it needs to be well thought out between the contributors or letter signers. This particular strategy has not been done yet, so you cannot dismiss it. I and many others know that sitting down and doing nothing and dismissing all solutions because of this fear or that fear will achieve nothing.

 

[barbc56]

Im been investigating what has made other illnesses advocacy successful. Thou Im all for truth and dont agree with twisting figures.. I'd like to say that with MS advocacy.. one of the reasons their advocacy was so successful, is they told lies of the exaggeration type
eg the very inflated MS population rate used (it may of been as much as 10% higher then the real rate) in their advocacy (that was even thou they knew the true figure as they'd done a study on it but they still kept on quoting, highly inflated rates). They used inflated figures etc in thier advocacy and when calling for gov funding etc.

But was their advocacy helped because or despite the exaggeration of the MS rate in the general population?

I agree that looking at other advocacy organizations can help us gain some insight into what worked, what didn't. It's also important to keep in mind how their agenda applies to our illness as well as the time of the advocacy.

Barb C.:>)

 

[barbc56]

I am certain that a letter of reply signed by Hooper and these other top doctors and researchers in the field of ME / CFS would start to change things in Britain. One needs to kick start a process in order to get it going. It cannot be a rushed job, it needs to be well thought out between the contributors or letter signers. This particular strategy has not been done yet, so you cannot dismiss it. I and many others know that sitting down and doing nothing and dismissing all solutions because of this fear or that fear will achieve nothing.

I think we need to ask ourselves if these doctors and researchers would want to have their name associated with Hooper's perspective of the world. I would think, but only speculating here, that scientist and researchers would hesitate as they tend to base their opinions on the scientific model where it's important to get as close to the truth as possible.

Would a letter written by these doctors and researchers without Hooper's name have more impact?

I just don't think Hooper is a credible authority figure.

Barb C.:>)

 

[Stukindawski]

I don't see the point in hunting for a white whale when there's plenty of fish biting.

The 000's of papers line really doesn't mean lot. We need to learn talk about Orthostatic Intolerance, POTS, Acidosis, inflammatory profiles (this one is difficult because immunology is very much an incomplete Science), diminishing aerobic threshold on repeated exercise tests and anything else compelling. We also need to not overstate the significance beyond something being an exciting lead for further research.

It's not a conspiracy of any kind that 1000s of jobs rely on the continued promotion of the psychosomatic theory of ME/CFS, so this isn't going to go away over night. Also it is, and should be acceptable for a Scientist to be wrong and not actually suffer for it.

Attributing actions to a specific nefarious purpose is no easy task, convenient correlations, even conflicts of interest prove nothing. Which is why a man like Rupert Murdoch walks free despite ostensibly to many, being a press baron who manipulates political figures to his own ends.

There are a LOT of people who want to see Murdoch behind bars, far more than Wessely, and you have to ask yourself, just how far they have got.

Sometimes in life, it's just better to focus on your own narrative and doing positive things to promote that narrative. I would much rather see a prominent ME charity hand out an award for service to ME research along with messages of thanks from patients, than to see this pyrrhic battle with one man (who is from a *group* of like minded individuals) continue ad nauseam and to the detriment of those who presume it serves them.

While you have a lot of researchers working on ME as a neurological condition, don't expect them to court contentious press coverage or denounce particular figures. Frankly, drawing scientists into that kind of argument is dangerous and threatens their future credibility and motives.

A series of interviews with ME/CFS researchers about their research and what it means, culminating in a good piece by an ME charity summarising and promoting those interviews for the mainstream press, would help to challenge the perceptions and science surrounding the illness without asking researchers to become media figures or plaintiffs. If you tie researchers too close to advocacy it starts to look too close as well and you can bet this will be exploited (in fact it already has by our friend Moby Dick).

 

[ukxmrv]

The Science Media Centre. David Egan, is a major problem in the UK.

We have a problem in that doctors, researchers who are on "our side" (for want of a better term) don't want to get involved in the battle of the media.

We simply don't have doctors who are willing to write letters to the press, plant articles in the press etc.

The "other side" and it would be more accurate of me to say "other sides" are willing to use the media to win. Wessely group does, the Lightning processs people do. Action for ME get pro bono help with campaigns.

The Science media centre supports Wessely et al. We don't have an equivilent media machine on our side.

I think that is why we should treasure Prof Hooper, Dr Weir, Dr Enlander and those who are happy to speak out.

Barb, why doctors, researchers and scientists would not respect their colleague Prof Hooper would be a mystery to me. He is after all a qualified person who has risen to be a Professor in his field.

 

[alex3619]

ukxmrv, in other words the biomedical ME people are engaging in science based promotion of ME research, but psychobabble uses politics and spin.

I respect Prof Hooper but I don't expect him to produce perfect work given how under-supported he must be. Perfection is not required, only desirable, and shouldn't be expected.

 

[Enid]

Well we certainly need some way forward - the "horrible" history in the UK (and the resultant negative press produced by those we basically only tried to educate in the biomedical research/findings) I feel should form less of our concern now and advocacy and education through recognised science and scientists - collaberating - somehow our way forward, though I appreciate there is an ongoing battle to rein in psychiatric mumbo jumbo and their misguided supporters.