From The Sunday Times, 31 July 2011 (comment piece by Rod Little)
Shoot the medical messenger – see if that’ll cure you
Medical experts who put forward controversial ideas should investigate their theories and not give in to ‘extremist' sufferers
They are hopping up and down with fury at the ME Association, the organisation that helps people suffering from what used to be known as “chronic fatigue syndrome” but now, for politically correct reasons, is known as myalgic encephalomyelitis.
Actually, I say they’re hopping up and down, but given the nature of their affliction, they’re probably sitting quite still, really. I meant hopping up and down as a figure of speech. Either way, they’re very angry. The problem was an interview on the BBC Today programme with a leading researcher into the causes of chronic fatigue syndrome, Prof Simon Wessely.
He believes the illness, which results in debilitating tiredness, aches and pains and so on, probably has a neurological basis.
As a consequence, he has received menacing phone calls and even death threats from “extremist” ME sufferers. So too has another researcher, Prof Myra McClure, who says she will now have nothing more to do with the whole business because she’s fed up with being abused.
It seems that those who suffer from ME, which used to be known as yuppie flu, do not wish to be stigmatised as malingering mentals, which is what they fear will happen if the illness turns out to have a psychiatric rather than biomedical basis.
On the ME Association website they don’t actually threaten to kill Wessely; instead you are left with the impression that he is pursuing this line of inquiry for mysteriously infernal purposes, and that he knows nothing about anything, and that he is part of a conspiracy with the whole psychiatric profession and the Today programme, especially Sarah Montague, and the government to cover up the real truth about chronic fatigue syndrome.
Indeed, such is the foaming paranoia on this site that you begin to suspect that if ME does have a neurological basis, it’s probably going to be the least of their mental worries.
The truth about ME, they assert, is that it is the consequence of some sort of weird retrovirus. In other words, it’s a proper illness, which we’ve caught from someone or something; it’s been given to us, it didn’t originate with us.
It is a peculiar and distressing, if not untypical, reaction from people faced with a mysterious and incurable disease. As Wessely himself says, in blank incomprehension, they would rather the disease be the consequence of a retrovirus that could possibly be fatal than be the result of a neurological disorder for which there is at least a form of palliative treatment.
No matter what evidence is marshalled by the likes of Wessely, some sufferers cling with grim and livid determination to a non-existent biomedical explanation; they assume, one supposes, that if it is primarily a mental condition then they have sort of brought it on themselves, and are in some way to blame for their affliction (which is a nonsense, of course).
Their denials and paranoia remind me a little of the reaction of some parents with autistic children who resist with fury the suggestion that this distressing condition might have been brought about partly as a consequence of assortative mating, as suggested by Prof Simon Baron-Cohen, rather than through mercury floating around in the atmosphere or the water pipes, or indeed the MMR vaccine.
The now wholly discredited MMR theory certainly served the psychological requirements of some unhappy parents, being not merely a clear cause but one that was imposed on their offspring by government diktat.
Baron-Cohen, meanwhile, received a lot of flak for this theory but, as he puts it, just because it is controversial doesn’t mean it should not be investigated.
Either way, some people seem to be terribly protective of their ailments, over which they believe they have a sort of droit de seigneur. Research of which, in their ignorance, they disapprove is seen as part of some plot to do them down and consequently underplay their suffering, and they decide its proponents must be vilified.
Why does this writer not understand a neurological disease isn’t a mental disorder? Epilepsy and MS are neurological, and are no longer consider mental disorders. May as well have chimps researcher for them. It takes two minutes to discover the history of ME, that it was first described in the UK in 1955 after a London hospital outbreak affecting mainly doctors and nurses. “Yuppie flu” was joked by the media in 1980s, 30 years after ME was named! It did not predate myalgic encephalomyelitis.
I do hope the MEA put this writer correct on his inaccuracies.
I am not paying a pound to read this trash, but I am sure ME sufferers and their carers are appalled and are leaving many comments on the site. Please, MEA, can you point out to this most ignorant of journalists, how factually incorrect and abjectly ingorant he is when he says: ‘They are hopping up and down with fury at the ME Association, the organisation that helps people suffering from what used to be known as “chronic fatigue syndrome” but now, for politically correct reasons, is known as myalgic encephalomyelitis.’? Prof Wessely, I hope you are proud of yourself and your PR machine in triggering this kind of journalistic abuse of patients with neuroimmune illness
“for politically correct reasons, is known as myalgic encephalomyelitis.”
That’s some fairly terrible journalism right there. It’s for scientific reasons.
“He believes the illness, which results in debilitating tiredness, aches and pains and so on, probably has a neurological basis.”
No he doesn’t, he thinks it’s a somatoform disorder. Which is the problem since the WHO classifies it as neurological condition and has done for a long time.
Since it appears you read this website Mr Liddle how about you answer some question.
If ME patients are alleged so stigmatised against having a psychology or psychiatric condition, why did I not only encourage my Dr to pursue a psych referral during the course of my initial diagnosis and attempt CBT/GET courses, not once but twice?
There was no initial refusal, and I’m sure I speak for thousands of people who have tried this approach without prejudice only to find their health get worse.
This is the problem, and now you are the problem.
Also it’s inaccurate to describe the MEA association as hopping up and down because for one, you can’t be sure that the people posting on the website are paid up MEA members, and for two, commenters do not represent the company line.
In fact congratulations to the MEA, I would imagine you have a nice lucrative libel case to pursue.
In the mean time Mr Liddle – you should start here http://www.mecfsforums.com/index.php/topic,8643.0.html and enjoy the fine words of Malcolm Hooper, and keep reading from there.
I don’t know why he should think the MEA is ‘hopping up and down’…
Oh Firestormm, you just have no idea how twitchy I feel when reading this obnoxious comment in today’s S Times.
I think people should take some time and read exactly what he is saying Tony.
But the MEA have nothing to be ‘hopping up and down’ for after the interview to which he refers.
The ones ‘hopping up and down’ are the ‘extremists’ and to comment with vitriol only proves his point (whatever that point really is – indeed if there is one at all).
I don’t personally feel even ‘twitchy’ I just feel numb and rather sad that it has come to this.
It terms of quality journalism this ain’t but then again it is a ‘comment’ piece and unlike the Telegraph for example, it’s primary purpose is not to inform or even reflect the ‘issue’ fairly, but to provoke a reaction.
Or something like that…
I think Liddle needs reporting to the press complaints commission for this attack.
I think so too. This is unacceptable.
I wasn’t ‘hopping up and down’ either but was very shaken and upset by this trash. It’s perfectly reasonable to react with emotion to Spin Friday, it doesn’t mean you are an ‘extremist’ who makes ugly threats. They can’t suppress a neurological illness for 20-30 years – as Wessely and his gang have done -and expect people to smile sweetly and say, No you’re wrong, Simon. As long as the anger is channeled in meaningful and useful ways, that is okay.
I agree I don’t see anyone “hopping up and down”.
Riddle should read this and try to gain some sort of basic knowledge of the people he is attacking. Then can he please try adjusting his behaviour.
http://imeassoc.com/Denial_of_science.html
Psychiatrists are in denial of the published biomedical literature on Myalgic Encephalomyelitis.
Simon Wessely and his colleagues, Peter White and Michael Sharpe, have caused a great deal of upset within the ME community of patients, doctors and scientists, by continuing to deny the published biomedical evidence that already proves ME to be a physical disease as opposed to a mental health condition(1-6), and by persisting in a campaign to give the impression that ME patients “seem to prefer to be diagnosed with, like a retrovirus, a potentially incurable, maybe even fatal illness, rather than an illness, for which actually we do have some reasonable, but not perfect treatments”.(7) Our society would not expect the Government to support such remarks and denial regarding biomedical evidence in other recognized neurological diseases with unknown causes, such as MS or Parkinson’s. So why is this situation acceptable with ME? And when is the Government going to distance itself from this willful disregard of the biomedical facts if they adhere to the World Health Organizations classification of ME as neurological?(6)
If Dr Wessely has indeed received death threats then the International ME Association (IMEA) unconditionally condemn such actions. However, we feel that specific’s should be provided when speaking to the media in order not to denigrate an entire community and so that those accused will have a right to reply if they wish. Official complaints to regulators should also not be erroneously categorized in this way or we risk undermining the raison-d’être of oversight bodies and preventing genuine complaints from being afforded due process.
The antipathy felt by many in the ME community towards the Wessely school of psychiatrists centers not on their attitude towards sufferers of the illness, but rather, on their attitude towards the use of the scientific method. In short the argument is not about their manners, but towards their methodology.
The use of the scientific method involves the use of empirical observations and measurements. The next stage is to develop a testable explanatory model to explain these observations, using the twin principles of parsimony and consilience. The next stage is to test this hypothesis predicatively or experimentally with the aim of disproving that hypothesis. This is key to being able to distinguish between scientific research and that which is pseudoscientific. The Wessely school’s approach is to begin with a subjective belief, that ME is a psychiatric disease, ignore 4000 scientific papers that support biomedical causation, and then design studies using subjective end points to prove their preexisting belief.
The recent PACE study is an example of the case in point.( This randomised control study had none of the characteristics of a scientific randomised control study. It was not randomised, blinded or controlled. The study was in fact open label, in which the psychiatrists knew which groups the patients were in and in fact allocated patients into groups on the basis of preexisting characteristics. The primary end points were purely subjective; in short, whether the patients felt that their fatigue or level of disability was better after treatment. Despite the results not having been reported in comparison with no treatment, they were lauded as a success. Yet, when the results are compared with no treatment, patients reported some 8% reduction in disability and fatigue levels. This is what Wessely described as “reasonable treatment” in his radio interview to the BBC.(7) When objective evaluations were made, the patients in the CBT arm could not walk an inch further in the allotted time compared to the no treatment group. This is again what Wessely describes as “reasonable treatment”. The IMEA asks whether any reasonable person would not take exception at such results being hailed as “reasonable treatment”.
Thus far millions of pounds of taxpayers money has been spent on trying to prove the Wessely school of psychiatrists to be correct.(9) Every study has failed to prove that ME is a psychological illness. Millions of taxpayers money will no doubt be wasted on this venture in the future. The IMEA submits that desperately ill people have a perfect right to be angry when the British Government wastes millions of pounds trying to prove that ME is a psychological condition and denying funding to any research examining biomedical causation despite the existence of 4000 published scientific papers showing a vast array of scientifically measureable neurological, endocrine and immune abnormalities in ME patients. The IMEA calls on other organisations, which purport to represent people with ME, to be far more intellectually aggressive in challenging the flawed reasoning of a small group of psychiatrists known colloquially as the Wessely school, who appear to have a monopoly on receiving Government and industry funding to prove that ME is a psychological illness despite its neurological classification by the World Health Organization.(6)
“We’re not going to go doing more and more tests to find out, well what was the virus, because frankly, even if we found it there is nothing we are going to do about it. We’re goin…in the business of rehabilitation.” Simone Wessely (10)
1) Kennedy, G. Biochemical and vascular aspects of pediatric chronic fatigue syndrome. Archives of Pediatrics and Adolescent Medicine. 2010.
http://www.ncbi.nlm.nih.gov/pubmed/20819963
2) Lombardi, V. Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome. Science. 2009.
http://www.sciencemag.org/content/326/5952/585
3) Costa, D. Brainstem perfusion is impaired in chronic fatigue syndrome. QJM. 1995.
http://www.ncbi.nlm.nih.gov/pubmed/8542261
4) Lombardi, V. Xenotropic Murine Leukemia Virus-related Virus-associated Chronic Fatigue Syndrome Reveals a Distinct Inflammatory Signature. In Vivo. 2011.
http://iv.iiarjournals.org/content/25/3/307.abstract?etoc
5) Hollingsworth, K. Impaired Cardiac Function in Chronic Fatigue Syndrome measured using Magnetic Resonance Cardiac Tagging. Journal of Internal Medicine. 2011.
http://www.ncbi.nlm.nih.gov/pubmed/21793948
6) World Health Organization. ICD-10. G93.3. 2007
http://apps.who.int/classifications/apps/icd/icd10online/?gg90.htm+g933
7) Feilden, T. Torrent of abuse’ hindering ME research. BBC. 2011. http://www.bbc.co.uk/news/science-environment-14326514
8 ) White, P. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. The Lancet. 2011.
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract
9) United Kingdom Parliament. Hansard. 2010. http://services.parliament.uk/hansard/Commons/ByDate/20101202/writtenanswers/part019.html
10) Simon Wessely. Chronic fatigue syndrome. BMJ podcast. 2010.
http://podcasts.bmj.com/bmj/2010/03/05/chronic-fatigue-syndrome/
International ME Association
31 July 2011
Disclaimer: This article is not intended to provide medical advice, diagnosis or treatment.
Permission to repost
Sorry for typos and repetition of ‘ignorant’ above, but I am actually shaking with anger at this article. It is simply unacceptable for a journalist to write so brashly with such a lack of knowledge about an illness, any illness: ‘No matter what evidence is marshalled by the likes of Wessely, some sufferers cling with grim and livid determination to a non-existent biomedical explanation’. Rod Liddle, if you are reading this, the International Consensus Criteria for ME, which appeared recently in Journal of Internal Medicine, will describe for you the many biomedical abnormalities found in ME patients. If you scroll down you can read it, not that facts actually seem to interest you. And my own illness was triggered in 1983 by an enterovirus, Coxsackie B4. I was diagnosed with myalgic encephalomyelitis – the label ‘chronic fatigue syndrome’ – did not then exist, contrary to your assertion – by a consultant neurologist in west of Scotland. The outbreak is described in Dr Melvin Ramsay’s 1986 book, ‘Post-viral Fatigue Syndrome’. Why don’t you get yourself a copy, educate yourself, you can buy it from MEA? I am wondering what a piece like this is supposed to achieve. What was your goal exactly?
What a surprise, the Sunday times (or rather news International) fund the Science Media Center, one of Wessely’s many propaganda machines. Cranking the misinformation wheel almost at will.
I have said this before, I challenge anyone whom doesn’t understand ME is a disorder of the nervous system (as recognized by the WHO) to accept a blood transfusion from me.
Being knowledgeable in the fact the punitive agent of ME was transferred to monkeys as far back as 1949, and since people with ME were banned from donating blood last year, I doubt there would be many takers.
Myra McClure was never a ME scientist, she did two poorly conducted papers on CFS. Unvalidated assays and changed every variable.
Last year she said nothing on god’s green earth could get her to do anymore research and then brought out the second paper this year and attended an psychiatric conference in the last month to talk about XMRV and ME.
It is probably not safe to therefore think she has left, especially when she too will probably be seeking HGRV funding in the future.
Simon Wessely also doesn’t think ME is neurological. He thinks it is a somatoform disorder where you have incorrect thoughts feelings and behaviour which make you sick, but you are not actually sick. A type of psychiatric condition that could never be proven to scientifically exist.
As Liddle is not aware, ME was first defined in 1956 by Donal Acherson (former CMO of England), approved for entry as a neurological disease by the World Health Orgnaization in 1964 and placed in their 8th manual in 1969. CFS is not ME and was invented by the CDC for political reasons in the 80s to group anyone with fatigue. Myalgic Encephalomyelitis is the official term, no other exists and research shows it is an accurate description, but of course not for those who don’t have ME.
Picking on ill people when you have great social power or influence is bullying.
To me, that is what this current campaign – led by Simon Wessley and continued by the likes of Liddle – is.
Tony, I’m sorry you and the people at MEA have to read this. It can’t make you feel good, as you are also affected by this disease. However, it’s made me fill in my membership form which has been sitting idly on the side for a while. It’s important, I think, to act when this sort of awfulness happens.
My best wishes and thoughts to all with this disease.
Rod Liddle comments: “No matter what evidence is marshalled by the likes of Wessely, some sufferers cling with grim and livid determination to a non-existent biomedical explanation”
Ok Rod…have a look at this. This just takes you up to 1993. A whole extra truckload of biomedical research showing provable abnormalities has happened since of course..but this is simply for starters:
“Grey” Information about ME/CFS Part 2: 1991 – 1993
Compiled by Margaret Williams 5th May 2011
http://www.meactionuk.org.uk/Grey-Information-Part-2.htm
Part 1 of these extracts from the “grey” literature on ME/CFS (1956 – 1990)
can be seen at: http://www.meactionuk.org.uk/Grey-Information-on-ME-CFS.htm
Our problem, in getting fair and balanced coverage of this subject, is that Prof Wessely is the gatekeeper to information on ME/CFS for the press, via his spokesperson position at the Science Media Centre*. SMC has left the auspices of the Royal Institution, and is now housed by the Wellcome Trust.
As well as that sinecure, in a circle that Government has seen as virtuous, Wessely has been handed positions of power over policy gate-keeping for ME with: the medical standards body NICE, the UK’s Medical Research Council and Sense in Science*. Wessely also holds a sheaf of positions advising the military on Gulf War Syndrome, another condition he says does not exist other than in the minds of combatants.
If events like Spin Friday (to coin a phrase) are allowed to go unchallenged, then the future for honest debate is sad indeed.
*http://www.sciencemediacentre.org/pages/
*http://www.senseaboutscience.org/index.php (also part-funded by the Wellcome Trust)
Completely agree with this. In the climate we have at present – post News International – the SMC bears more than a little similar scrutiny.
Thanks for coining this spin Friday. We need a easy way to refer to this in the future when they are all investigated.
Yep- ‘Spin Friday’ – enters the lexicon of ME 🙂
Yes, “Spin Friday” was just the latest of the psych-brigades orchestrated assaults via the media.
However, one can’t help but have some admiration for how good they are at it ……. and how they are so very well connected in media circles.
@jace This is what is so frightening, the power and the abuse of power, which can result in this extravaganza of hysteria from the media which we have seen this weekend. I strongly suspect Prof Wessely is so displeased at the mounting biomedical evidence – the International Consenus Criteria being the icing on the cake – that he is thrashing out, all limbs flailing, joined by his powerful media friends. A tiny, tiny minority of ME patients have acted extremely over the years – and while we do not condone, Wessely and co have to ask why patients would resort to such desperate tactics in the first place; and now this weekend, we have had headlines galore about ‘torrents of abuse’ etc. Why? I think Prof Malcolm Hooper is right, whenever Prof Wessely feels threatened by biomedical evidence, he gets out his ‘media machine gun’ (my words, not Prof Hooper’s) with scant concern for how a mostly innocent patient population is being demonised. It’s so distressing to be an ME patient, being caught up in all of this crap, as everyone on here knows. And I join Billie in thanking the MEA from the bottom of my heart for supporting us. I am not a member either, having been ill for so long, I let memberships slide over the years, but I really should get a form filled in.
He will lose the plot when the next positive human gammaretrovirus paper is published.
Not too long to wait now JT before the tide will turn !
Hi,
The ME Association and Action for ME need to get together and make a formal complaint to the Press Complaints Commission.
The tone of the report was biased as equal air time was not given to Charles Shepherd, and subsequent newspaper reports expressed bias against this group of patients.
It is wrong to publicly stigmatise a group of people in this way, and redress can be sought for this.
I also think the whole event should be raised in parliament because this illustrates the problems repeatedly encountered by the stranglehold of the Science Media Centre.
This must be challenged.
I urge anyone reading this who feels abused by the coverage of this matter to write to their MP, or if you dont like writing letters, to go and discuss this problem with them at the MPs surgery. Times and dates can be readily found on the internet.
Well said Currer.
Dear Rod here is you first lesson in ME science.
This first paper is where the name ME was first used.
A New Clinical Entity? Leading Article. Lancet 1956: 789-790
This paper is where the term CFS was first used.
Chronic Fatigue Syndrome: A Working Case Definition. Annals of Internal Medicine 1988.
Here are some of the 4000+ papers that already show the known biology of ME. The first one is the study that validated the results of XMRV from the NCI, CC and WPI. HIV has variants too and we didn’t pretend they were a different virus after discover one variant.
Lo. Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors’ PNAS 2010.
Kennedy. Biochemical and vascular aspects of pediatric chronic fatigue syndrome’ Archives of Pediatrics and Adolescent Medicine 2010
Costa. Brainstem perfusion is impaired in chronic fatigue syndrome’ QJM, 1995.
Spence. Enhanced sensitivity of the peripheral cholinergic vascular response. Am J Med 2000
McCully. Muscle metabolism with blood flow restriction in chronic fatigue syndrome. J Appl Physiol 2004.
Puri. Relative increase in choline in the occipital cortex in chronic fatigue syndrome. Acta Psychiatr Scand. 2002.
Chaudhuri. Proton magnetic resonance spectroscopy of basal ganglia in chronic fatigue syndrome. Neuroreport 2003.
De Meirleir. A 37 kDa 2-5A binding protein as a potential biochemical marker for chronic fatigue syndrome. Am J Med 2000.
Tiev. RNase L levels in peripheral blood mononuclear cells: 37-kilodalton/83-kilodalton isoform ratio is a potential test for chronic fatigue syndrome. Clin Diagn Lab Immunol 2003.
Hollingsworth. Impaired Cardiac Function in Chronic Fatigue Syndrome measured using Magnetic Resonance Cardiac Tagging. Journal of Internal Medicine 2011.
I am so tired of reading rubbish like this that I am not going to waste any of the small amount of energy I have in responding to Mr Liddle. I am so glad that organisations like the ME Association exist to fight on my behalf against the continued ignorance and bullying by those who should know better.
Currer is right. This is something that the MEA and AYME should take on. Any chance, Dr. Shepherd, of lodging a complaint with the Press Complaints Commission? We need your gravitas
Another reference for Rod Liddle, which gives an excellent precis of biomedical research, with references, is of course the paper that may have precipitated this defensive* action from Wessely:
Carruthers et al; Myalgic Encephalomyelitis: International Consensus Criteria; J Intern Med. 2011. doi: 10.1111/j.1365-2796.2011.02428.x
*defense of the ‘attack is the best form of defense’ school
There is hardly one correct fact in the whole Liddle article and it is so unfair to target the MEAssociation, which has scrupulously supported debate on all research findings, and never made personal attacks on researchers. All it, and the many, many sufferers of ME ask, is for public funds to be allocated for biomedical research. American studies have recently found promising clues in spinal fluid, cytokine levels and heart function, and it would be great to have Britain fund its own scientists for these kinds of projects.
Tony, I very much hope there is an avenue to counter his unprovoked, factually incorrect and offensive piece through formal channels. I think it’s very important the M.E. Association stands up for itself and refuses to tolerate this kind of attack on its integrity. Liddle has made very serious accusations, apparently not based in fact, and he and the publisher must be held to account.
I’ve lodged a formal complaint with The Times. His article makes the Daily Mail look measured.
The MEA is now drafting a response to Rod Liddle to correct the various factual inaccuracies and misrepresentations in his Sunday Times commentary.
Guidelines for letters to the editor of this branch of the Murdoch press are as follows if anyone else wants to write in:
Email letters to letters@sunday-times.co.uk
This week there is half a page of letters – most of which are about 50 to 200 words long. So it’s best to keep the wording short and straight to the point.
A few people are given a bit more space – but 400 words appears to be the absolute maximum length.
Letters should arrive by midday Thursday and include an address, daytime telephone number and evening telephone number.
If the Sunday Times refuse to make any corrections I think a complaint to the Press Complaints Commissions would be fully justified.
CS
Myra maclure is always threatening to step down and Simon wessely has stated that he no longer works on ME .If Simon has retired why was he involved in the pace trial and why is he putting forward views about a disease he is no longer working on ? Why is Mayra McClure attacking people who are disagreeing with her theories across the media in this manner? Why are MYRA and Simon attacking so vigorously the people they profess to help? Will the next news report be I no longer work on ME from Simon but I’m being even more abused than before and I’m definitely going to Iraq because it’s safer, or there is even more or vile campaigners against me from Myra and I will definitely stand down if people do not agree with me.Were is there professionalism and good manners and behaviour in remaining detached dignified apart from mud throwing and emotional bribery which they seem to profess is so appalling from ME patients. If Simon wessely is retired it makes no sense to attack him but if he is pushing the blame onto everyone else and secretly running the psychological beliefs boat and pushing graded exercise, pace trial, or illness beliefs business then people will want answers and will complain .comparing protestors over autism to ME patients I feel seeks to damage the reputation and credibility of ME supporters by comparing them to supposed deluded individuals a different campaign. Such tactics to destroy credibility by association could be applied to any disease or protest group such as calling human rights activists terrorists or madto discredit them anywhere in the world.
I came across this:
http://www.markpack.org.uk/9261/pcc-criticises-rod-liddles-spectator-blog/
It appears it’s not the first time Mr Liddle has made sweeping, inaccurate, offensive statements. Okay, this was a personal column, his take on things, not factual reporting, but it is such a skewed piece, it is risible. And, of course PWME can still be hurt by it.
Prof Wessely, as stated by @Matt above, does not believe that ME ‘probably has a neurological basis’, he has, in fact, based his career on denying that it is neurological. That is the reason for patients being upset, in the first place, so conveniently ignored by the media this weekend.
I also think the ‘extremists’ who make threats – the tiny, tiny minority – are probably severely ill for years – or carers of severely ill – bedridden, at the absolute end of their tethers, perhaps little or no family support, crushed at having psychosocial nonsense from these UK ‘specialists’ dominate, decade after decade – they must feel absolutely hopeless. Extreme behaviour usually results from powerlessness, and expectations that nothing will change. I am ‘lucky’ to be moderately ill now, still severe dips, but no longer chronically severe, but I know that without strong family support this illness could easily undo you. Again, I am not condoning such threats, but perhaps you need to have been severly ill to understand why they might have arisen in first place.
No one wants to see anyone threatened, but nothing has been presented as evidence to show it has. I’m not going to take the word of the Wessely school on this, as it came after the new ME criteria was published and in the middle of HGRV research.
@JT I know, it all seems expedient. So hard to know what to believe.
From Nigel Hawke’s article in BMJ in June:
https://meassociation.org.uk/?p=6711
‘As for Professor Wessely, he gave up active research on
CFS/ME 10 years ago. He now specialises in the problems of
war veterans. “I now go to Iraq and Afghanistan, where I feel
a lot safer,” he says.’
So is Prof Wessely referring to threats from ten years ago? For someone who has already left the field he has been remarkably vocal this last few days.
I am appalled by the article penned by Mr Liddle & am very pleased the MEA is responding to it.
I am amazed Simon Wessely is saying he is no longer involved in ME/CFS but still thinks he has the right to pontificate on the subject.
He is of course still one of the leading lights of the CFS Research & Treatment Unit at Kings College along with Trudi Chalder. When I was referred there by my PCT, which is still picking up the bill for the CBT sessions, I was interviewed/ assessed by one of his SHO’s – the assessment letter is signed ‘SHO to Professor Simon Wessely’.
The ‘Treatment ‘ aspect is purely CBT which hasn’t ‘improved’ my condition, in spite of me having a very openminded approach to complementary treatments eg having previously responded well to chiropratic, for an unrelated ailment. Before developing ME I was very fit & healthy with more than a passing understanding of the principles of CBT & GET. I have paid out a small fortune to attend this unit & both I & my PCT have had poor return on our investment. I would love to be able to work – I enjoyed my work, I was good at it, the regular salary was good & I was not dependent on my family for help with almost everything on a daily basis. In other words, someone for whom CBT should have proved positive if ME is indeed all in the mind.
The ‘Research’ aspect is flawed. I volunteered to be included in the MRI brain scan trial but was rejected because my GP had prescibed Amitriptyline 10 mg at night both to help with pain relief at night & to aid sleep & it ‘would distort the findings’!
Of course there is a psychological element to almost every illness/disease/injury but by itself it does not cause the illness/disease/injury.
PWME should not be treated as the perpetrators of this debilitating & incapacitating illness & suffer such ignorant & arrogant attacks by the media & others.
What was it that motivated this most ignorant of journalists to write such a bitter and twisted commentary? Why did every shred of concern and compassion for sufferers desert him when he wrote it? When did he presume to be so knowledgable about M.E. that any need to check his facts became superfluous?
Is he so filled with seething disdain for people with M.E. that he is completely blinkered to the facts of both the science and the tainted politics of M.E.?
Rod Liddle appears to have allowed himself to be taken in by the unsubstantiated and potentially inflated claims of harassment made by Prof. Wessely and his associates. Consequently, in writing this article in the manner that he did, he has done grievous harm to the public perception of this illness and to the reputations of those who suffer from it.
I recalled blogging a BMJ podcast last year, featuring Simon, so I was curious and looked it up.
http://podcasts.bmj.com/bmj/2010/03/05/chronic-fatigue-syndrome/
Sounding very relaxed and unthreatened (4.5 mins in), he discusses in length his ‘pragmatic approach’ to the illness and towards the end he comes in again (23.25 mins) and when asked about the future of research he says he would like to see more doctors and scientists from other disciplines get involved because the area is under-researched. He finishes with ‘You’d be surprised to learn it’s actually very enjoyable and very rewarding.’
No mention of threats. A very different Simon to the one we heard last Friday.
Wow. He’s an ascerbic guy at the best of times, so that aside, it’s the sheer lack of any depth to his understanding that is the sad thing. To be attacked is one thing, to be attacked in ignorance is just annoying. I wish he had actually looked into the real grievances, the reality. The fact that much points towards a biomedical-explanation and that is where the frustration lies. This isn’t a blank canvas, it’s a street with loads of arrows pointing in the same direction but a guy with the money and the power insists on walking the other way. And dragging you with him.
And I don’t know what MEA site he went on.
God, I’m embarrassed for Liddle. He’s really exposed himself for what he is.