The ME Association has been offered the top slot on the BBC Radio 4 Today programme tomorrow morning (Friday) to discuss the present state of ME research in the UK.
MEA medical adviser Dr Charles Shepherd (pictured) is expected to be interviewed at 8.10am – with an earlier recorded package presented by BBC science correspondent Tom Fielden, which is expected to feature interviews with Professor Simon Wessely and Dr Esther Crawley.
If you're near a radio, start listening at about 7.45am to catch Fielden's report.
Of course, this announcement comes with the usual warning. The item may be squeezed out if a major news event breaks. We were trumped by the Public Sector Pensions story this morning.
I would rather not see this interview go ahead.
Wessely and Crawely do not have the scientific nor medical background to discuss the disease ME/cfs, and it is intellectually dishonest to talk about CFS as if it were an alternative name for the severe neurological disease ME. CFS is a broad category of waste in which to throw diseases in order to benefit the Governments purse. Here they can be dismissed without further scientific research. Abandoned to CBT and GET fanatics, without the need to provide scientific proof of efficiency for those illogical treatments. The PACE trial failed. Perhaps a course of CBT would correct their inappropriate wellness beliefs about people with ME.
Patients have had enough of these attacks. Stop interviewing those disgraceful people.
Much of psychiatry is a belief system dressed up as science. The same people that told us in the fiftys and sixties that prefrontal leucotomty could cure schizophrenia told us multiple Sclerosis was psychosomatic. If Wesseley could do something about the dissorders he was trained to treat we might have some confidence in what he says about ME. As it is I don’t hear hear about any breakthroughs in the treatment of serious mental dissorders. When as a nurse manager I used to challange Psychiatrist’s about there lack of success in treating patients, I was fobbed of with the comment that the Psychiatrists job was to manage the patient’s illness!
Meanwhile people are actually dying as a direct results of ME.
It’s crazy!
JT, you should direct that complaint at the BBC. I’m glad the MEA has been invited to participate, and I hope Dr Shepherd will put forward the view that ME is a specific subset of what the psychiatrists call CFS, that it’s a very serious disease, and it needs research funding urgently.
Why do you think it is not directed at the BBC.
It would be better if we had one of the retrovirologist’s who is finding HGRV infection, than Dr Shepherd who has not been given accurate advice on the topic.
I’m afraid I’m rather more with JT on this one.
I’ve heard a lot of propaganda recently on the BBC about disabled people.
I expect this to be carefully crafted propaganda too.
Propaganda only works when most people dont recognise it as such, though.
How biased can one program be? Who is going to explain why there has only been psychiatric investigation of M.E. (sorry, CFS) at a cost of millions of pounds? Who will explain the failure of the PACE trial and the wasted millions of pounds? Who will explain the bias of the M.R.C? The bias of the S.M.C? Who will even mention XMRV and the complete lack of biomedical science in this country?
Will C.S. defer to the “balanced, rational thinking” of Wessely & Crawley (Somatoform Inc.)? Or, will he come out fighting on behalf of the people this charity is supposed to support, people who’s lives have neen wrecked by a NEUROLOGICAL illness that is M.E?
In the week that has seen the publication of the quite brilliant International Criteria Consensus on M.E. this would seem to be such a biased program that one would think that Wessely himself had organised it. Even that is not beyond belief, given that he censors what comes out of the Science Media Centre.
Can we expect Dr C.S. fight our corner? As my sons would say, “Yeah right!” :O(
What’s there to discuss about the present state of ME research in the UK? It can be summed up in one word – ZILCH.
There is no proper government funding for any serious ME research at all. There has been some pseudo-research like the fake PACE trial and the similar FINE one, the outcomes being predictably negative and of no practical use.
No-one here has proper funding to do retroviral research or even simple clinical trials of anti-retroviral drugs, all of which are rather expensive.
Dr Charles Shepherd, who has ME himself, would have been expected to embrace the discovery of XMRV with both arms, but he has been sitting on the fence, so he’s not going to present a clear viewpoint against the Wessely School’s disinformation campaign.
Exactly currer
And Dr Shepherd is legitimising Crawley and Wessely by
appearing on the programme with them.
Yet another discussion (talking) shop airing both arguments and stating it’s partly psychological.
Same old same old.
I hope that Dr Charles Shepherd sees this “talk” tomorrow as a great opportunity to fight for our corner, to stand up against the Crawler-Wessely Cartel, to plug the new International Consensus Criteria and the legitimisation of the term “ME” while setting aside the term “CFS” forever, to have a dig at the MRC for failing to sponsor appropriate biomedical research and to try to shoot down in flames the “SMC” for its applying psych bias to all the media.
On top of this biased piece of journalism, we have Holgate in Nature Reviews saying ME came after CFS. He even gets the official WHO name wrong.
ME circa 1956, enter the WHOs 8th manual in 1969.
CFS invented (not a discreet disease) in 1987 by the CDC to hide their numerous ME outbreaks. Rest of the world cottoned on and made it cheap for much longer in 94 with the invention of the Fukuda definition.
How can this person not know this and still be in charge of the MRC expert group (give me a break) on the UK’s creation CFS/ME?
Try Myalgic Encephalopathy JT and not Encephalomyelitis.
It is unhelpful and untrue to say that, by appearing with Wessley and Crawley, Dr Shepherd is legitimising them.
They are unfortunately already legitimised by being invited onto the BBC to comment. But as a lead player in the Science Media Centre, Wessley will no doubt always make sure he is right there, expressing his strange views about ME to the world and blocking the wider, more informative picture. And as there seems to be hardly any truly investigative journalism anymore, he can do so without hesitation. For now.
What Dr Shepherd will do, I’m sure, is discuss the biomedical disease ME. Personally I hope there is mention of the psychiatric stranglehold on useful research, and the uselessness of the PACE trial where a ‘successful’ outcome still qualifies someone as ill enough to be enrolled in the trial. I also hope Dr Shepherd will not join others in premature conclusions about XMRV – the Lipkin trial needs to be undertaken before conclusions are reached.
What I DO know is that Dr Shepherd also has ME; that despite this he has used his limited energy to try to improve the situation for people with ME, and I very much appreciate that. I also note how some people with ME feel entitled to vent their anger at him, essentially using him as a punchbag, and that really sickens me – I have no respect at all for people who do that, and don’t even think about using your illness to justify such actions. It doesn’t.
So best of luck tomorrow Dr Shepherd. I despair that Wessley etc are given any time at all. The BBC is actually where our views about SW should be clearly made. Clearly and coherently. No-one ever listens to a diatribe. Why shoud they?
I’m really getting fed up of Prof Wessely being given a platform to air his wrong headed beliefs about ME/CFS in the media. I’m not sure this radio programme is going to achieve anything but maybe l will be proven wrong.
Good luck tomorrow Dr Shepherd.
please please PLEASE… if anyone does contact the BBC please refrain from any hyperbole, sensationalism and personal insult,
– in order to avoid giving them ammunition and a way to discredit the voice of patients and advocates….
I agree with Billie. While Dr Shepherd is no militant, I always agree with what he says and he says it well, clearly and calmly. Therefore his appearance on radio or TV always gets a cheer from me.
It is immensely depressing that Simon Wessely is being given a platform on one of the rare chances to get some good information out there but I would much rather have Dr Shepherds voice than none at all and hopefully he will get to knock down any nonsense SW comes out with. I don’t think he’ll get the air time to mention all the things that are relevant though. But I wish him well and will be thankful that there is at least another voice rather than just SW.
And as for being on the fence with XMRV, rightly so. It’s in its early days even if you think the discoveries are valid and no cause has been shown, so if he did ’embrace it with both arms’ then I’d be annoyed with him for jumping on a possibility and not waiting on further evidence. And why that should stop him challenging SW’s nonsense, I don’t know.
Wessely claims to have left working in CFS 10 years ago. He is not an expert in ME and should not even be interviewed on fatigue.
Radio 4 Today prog Crawley and advocates intimidation
be on listen again here http://news.bbc.co.uk/today/hi/today/newsid_9550000/9550947.stm
BBC News – Today – ‘Malicious’ harassment of ME researchers
news.bbc.co.uk
Professor Simon Wessely of King’s College London describes the people who are “trying to make life difficult” for ME researchers.
Wessely, Crawley, Shepherd, Dr Donica
Shepherd’s doing well so far – he had the last word
Finished at 8.02 BST – iPlayer radio is usually available out of the UK.
I wrote this as it was happening. Thank you, Dr Shepherd! Well done – and you had the last word.
I guess you’ve accepted that we have an encephalomyelitis 😉
I can feel an email to R4 coming on.
Ah now I’ve got it. A two part interview. Charles Shepherd on later.
Well done Dr Shepherd, I’ve just heard your interview.
You spoke up well for us.
Wessely and his cabal of self interested associates have been peddling this overblown line (about indimidation of researchers) for some time now and in so doing are playing a perverse game with the media in order to garner support for their cause at the expense of M.E. patients.
More fool the media – particularly the BBC and the BMJ – for believing them.
The abuse that Wessely and his cronies have been subjected to is nothing by comparison with the suffering of patients that their so called “research” has been knowingly complicit in prolonging.
However, you have to admire the degree of influence that they exercise at the highest levels in government and the media. They obviously work very hard in order to achieve and maintain that.
Well done Dr. Shepherd for your robust defence of a viral etiology in M.E. during the BBC interview.
Perhaps, when the smokescreen of deliberately peddled misinformation has been lifted (as it surely will be quite soon) you will also come realise that MLV’s play a pivotal role in this disease as well.
Well done Dr Shepherd. You spoke up for us well.
How can a complaint to the GMC, an ethics board, or any other body that handles official complaints, be regarded as a threat.
People have legitimate reason for raising the behaviour of these people and their ties to the insurance industry.
It is disgusting that they would attempt to silence those who wish to correct this situation.
We have to admit that Wesseley et al are brilliant …
as propagandists. They are self-interested and disgracefully unscientific but superb at presenting their unethical case with such enormous conviction.
Thank you, Dr Shepherd for such a calm but forceful rebuttal of the psycho-twaddlers.
Thank you Dr Shepherd for speaking up for us. In the limited amount of time available, and in the face of almost agressive bias by the interviewer Sarah Montague, you represented us well. I agree with Billie and May – we need to remain calm and composed. Giving in to the very understandable frustration and anger resulting from having to deal with people as disingenuous as Simon Wesseley is not helpful.
Thank you Dr Shepherd.
I think had you not appeared on the programme then we would have suffered directly as a result.
It seems to me that many commentators and self-appointed ‘advocates’ are only playing into the hands of the media and those they resent over this with one of the outcomes being that research suffers as a result or perhaps more likely, that we lose impetus.
Personally, I would rather all this attention today was afforded to discussing the actual condition and not at the vitriol expressed by the few, but perhaps something good will come out of it. Gods I hope so – I really do.
It looks like the media will be milking this today, but I notice your comments are being featured also – without them it would be a dire day indeed.
Dr Shepherd…Thank you for your excellent comments, remaining composed, despite the obvious bias of the piece. I thought “as always” you were the voice of reason, truth and balance…
Too right, Soloman! ‘We have to admit that Wesseley et al are brilliant …
as propagandists. They are self-interested and disgracefully unscientific but superb at presenting their unethical case with such enormous conviction.
Thank you, Dr Shepherd for such a calm but forceful rebuttal of the psycho-twaddlers.’
They are clearly panicked by the International Criteria Consenus and the revised CCC so had to put together a fast little hatchet job on PWME. I am also disgusted at obvious bias of BBC.
We have seen no evidence from Wessely et al of these ‘death threats’ The worst part of the worst email I heard read out yesterday said “you will pay” at the end, which could mean “what goes round comes round” or “you’ll be discredited” just as easily as being a threat of physical harm.
Anyone else find the idea of ME terrorists faintly ridiculous? We find it hard enough to get to the local shop!
Firestormm, the media campaign yesterday, no doubt facilitated by the Science Media Centre’s press machine, was pure spin, a fear response to research funding and findings, nothing to do with pwME. IMHO.