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Today Wessely authors an article in the Spectator about ME extremists

Wonko

Senior Member
Messages
1,467
Location
The other side.
It would be unwise to underestimate him, look at his history, he's come from nothing (re ME), produced no evidence (a vague theory doesnt count as evidence) but taken over the field of ME, advises governements, private companies and controls the media (at least in the UK) on matters ME. He and his associates have come close to taking over ME policy in the western world. No matter what he says, what contractictions or bare faced lies come out of his mouth he's believed, printed, published and financed.

This man is a professional elite class manipulator, apparentl with powefu backing, it would be unwise to count him out until he's been certified dead, disected, made into catfood, disributed across the world, eaten by several million cats, and the cats have all been buried. And that wasnt a threat, that was a measure of how far I think his influence and the ability of his "idea's" to be reserected if the "need" arises. In a horror movie never count the monster out until the above has occured or your asking for a sequel. As someone who'd been liviing in a horror movie for some time now I was it to end, with no sequels.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Dr Charles Shepherd of the MEA writes on his facebook page of the recent media articles of Wessely etc claiming harassment from ME sufferers:

"My own view is that most of the people who do this have a mental health or personality problem rather than having ME/CFS."

Would you have a link to that quote from Dr Shepherd at all? And are you able to explain what he might have meant?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Would you have a link to that quote from Dr Shepherd at all? And are you able to explain what he might have meant?

Hi Firestormm, at the risk of projecting my own opinion on this issue, I think what he meant is that the Oxford criteria selects a large cohort of people with psychiatric issues and not many ME patients. So it is more likely that any threats, should they be able to be substantiated (no evidence yet), are from the misdiagnosed psychiatric patients.

My own opinion is that while we are misdiagnosed frequently under the biopsychosocial models, so are psychiatric patients. It is probable that all groups diagnosed by these models are being treated ineffectively, and as a result some are going to get angry. Everybody deserves a proper diagnosis and better treatment.

Bye, Alex
 

Dolphin

Senior Member
Messages
17,567
Spectator letter lengths for last two weeks

I see the Spectator have http://www.spectator.co.uk/corporate/contact-us/


Can anyone see the longest and shortest letters? How many words do they have (approx. would be ok)? There is a chance a magazine might not want a very short letter e.g. 50 words, so Id like to have an idea what sort of letters they like. Should be useful for other people also.
Looks like I'll have to shorten my letter - drat.

Hopefully, others will be writing letters to the Spectator in reply.

Letters go to: letters@spectator.co.uk (letters @ spectator.co.uk)

Found the Spectator letters on the site. :)

Spectator Letter word lengths for last two weeks - I've combined them to increase the sample size (from http://www.spectator.co.uk/politics/all/7189868/letters.thtml and http://www.spectator.co.uk/politics/all/7174733/letters.thtml )
The word counts include counting bits like "letters, August 20":

42, 45, 46, 112, 113, 122, 140, 158, 187, 238, 272, 289

So 12 letters or average of 6 per week.

Range: 42-289 words

Median length: 131 words

0-100 words: 3 (25%)
101-200 words: 6 (50%)
201-300 words: 3 (25%)
301+ words: 0

Commenting on pieces from the last edition: 8 (67%)
Commenting on pieces from the second last edition: 2 (17%)
Commenting on pieces from the third last edition: 1 (8%)
Perhaps no specific edition: 1 (rioters) (8%)

So again, best to get them in reasonably soon so they can be considered for next week's edition.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Hi Firestormm, at the risk of projecting my own opinion on this issue, I think what he meant is that the Oxford criteria selects a large cohort of people with psychiatric issues and not many ME patients. So it is more likely that any threats, should they be able to be substantiated (no evidence yet), are from the misdiagnosed psychiatric patients.

My own opinion is that while we are misdiagnosed frequently under the biopsychosocial models, so are psychiatric patients. It is probable that all groups diagnosed by these models are being treated ineffectively, and as a result some are going to get angry. Everybody deserves a proper diagnosis and better treatment.

Bye, Alex

Hard to tell Alex without it being read in context though isn't it?

'Dr Charles Shepherd of the MEA writes on his facebook page of the recent media articles of Wessely etc claiming harassment from ME sufferers:

"My own view is that most of the people who do this have a mental health or personality problem rather than having ME/CFS."'

He could be referring to those who write the articles! ;)
 

Angela Kennedy

Senior Member
Messages
1,026
Location
Essex, UK
Hard to tell Alex without it being read in context though isn't it?

'Dr Charles Shepherd of the MEA writes on his facebook page of the recent media articles of Wessely etc claiming harassment from ME sufferers:

"My own view is that most of the people who do this have a mental health or personality problem rather than having ME/CFS."'

He could be referring to those who write the articles! ;)

He made similar comments in the Hawkes article.

Speculative psycho-analysing of unknowns ALLEGED to have committed crimes does not constitute a suitable, professional, effective response from the Medical Advisor of a patient organisation.

Nor does the '50-100' quantification of alleged 'harassers'.
 

Min

Guest
Messages
1,387
Location
UK
Would you have a link to that quote from Dr Shepherd at all? And are you able to explain what he might have meant?

http://www.facebook.com/permalink.php?story_fbid=123002717799066&id=171411469583186

Charles Shepherd As I've already mentioned in previous posts on this subject I, too, receive occasional hate mail, anonymous phone calls etc and have on two occasions reported named individuals to the police.

In most cases the source is anonymous but there are a small number of individuals who can be identified.

My own view is that most of the people who do this have a mental health or personality problem rather than having ME/CFS.
August 22 at 6:31pm
 

Min

Guest
Messages
1,387
Location
UK
This horror was on the Daily Telegraph website earlier and is apparently to be published on Monday:


"By Max Pemberton7:30AM BST 27 Aug 2011
It might seem strange that a group of doctors would be subjected to harassment, bullying and death threats for attempting to help people. Even more baffling if the death threats should come from the very people they were trying to help.

Max Pemberton
Yet earlier this month, Prof Simon Wessely, a doctor and pioneering researcher into ME (myalgic encephalomyelitis), disclosed that he and other scientists working on the condition had received death threats from a small group of protesters who have ME. In addition, the protesters have made complaints to the General Medical Council, universities and ethics committees all of which have been proved to be baseless in an attempt to disrupt further work.

The reason for their behaviour is that research is focusing on the psychological basis of the condition; as a result of the findings, ME is now considered to have a significant psychiatric component. While the protesters represent only a tiny fraction of those with ME, it is true to say that many others feel strongly about the suggestion that it has any basis in psychology at all.

Symptoms of ME include extreme fatigue and muscle pain. Sufferers are often bed-bound or have to use wheelchairs. Many claim that their condition is the result of a viral infection or exposure to environmental toxins. Research to date has failed to support conclusively this hypothesis, much to the chagrin of sufferers who feel frustrated and angry that doctors remain sceptical that this is the actual cause.
The ME Association, while condemning the death threats, said that sufferers have a justifiable complaint, as almost no ongoing government-funded research is looking into the bio-medical basis of the disease. This is disingenuous. Firstly, research is being carried out into the viral aspect, with the Medical Research Council backing a recent study into precisely this.

In addition, years of research have already been undertaken, and has produced underwhelming, inconclusive results to support a bio-medical cause. It wasnt until psychiatrists such as Prof Wessely started treating the condition as a mental illness that real progress was made.

The current gold standard for treatment is a combination of supervised exercise and talking therapies. A major British trial published in The Lancet found that at least one in three patients with ME recovered using this approach. The biggest hurdle faced by doctors is persuading people to actually attend and engage with treatment. They resist because they refuse to be seen as mentally unwell. It does seem bizarre that those with such a debilitating disease would refuse treatment because it was given by a psychiatrist.
Most people are more than happy to be seen by any specialist. If you have a painful knee, for example, you might be seen by a rheumatologist and an orthopaedic surgeon. If the condition was seen as involving one more than the other, that would never be considered evidence that no one was taking you seriously, or that your welfare was undermined. Microbiologists and immunologists have been unable to help ME patients, and so psychiatrists have become involved. But that is considered outrageous. People refuse to go to outpatient appointments and refuse treatment, despite evidence that it works. Accusations are thrown around that the medical profession is not taking them seriously. But just because doctors frame a condition in terms the sufferer does not like does not mean doctors are not taking it seriously. That people feel threatened by the idea that ME has a psychological component says a lot about the stigma of mental illness.
Its an attitude that dogs the lives of many people living with mental health problems. Yet, for me, a psychological explanation is a very real one. It doesnt mean someone is faking it; it doesnt mean the illness doesnt exist. It also doesnt mean that people should be able simply to pull their socks up and get better, or that its under conscious control. However, it is testament to the complexity of the brain that the mind is capable of such stark physical symptoms. As a model for understanding a condition, its as valid as any other.
 

Enid

Senior Member
Messages
3,309
Location
UK
That's an odd one from a Doc who is usually a patient avocate - but he is of course a Psychiatrist - so the old nut trundles on. He doesn't get the point - it's not our "concern" about any stigma attached to mental health problems but that ME was and is considered in any way falling into "mental health" in the first place. Treatments now come from Docs well outside "mental health" - the Psychos should learn to leave well alone things they do not understand whilst others in other specialities do.

The observation of SW that "yes we do have a bad image" is grounded in experience (twice in my own case and very bad experiences) They would be better advised to ask themselves why instead of resorting to a "mud slinging" campaign. I think it is time to bring all together on the history now and present the other side of the story in this blatant attempt to keep psychiatry in the frame of (? all) diseases when there are specialists in the various fields.
 

Trooper

Senior Member
Messages
105
Location
UK
Thanks from me too Min. I've been looking for this but it kept disappearing.

Perhaps the biggest irony of the latest media drivel is that the comment sections are not full of ranting loonies intent on death to all M.E. researchers - thus contradicting the whole campaign.
 

orion

Senior Member
Messages
102
Location
UK
He made similar comments in the Hawkes article.

Speculative psycho-analysing of unknowns ALLEGED to have committed crimes does not constitute a suitable, professional, effective response from the Medical Advisor of a patient organisation.

Nor does the '50-100' quantification of alleged 'harassers'.

Indeed. Once again Shepherd lets us down. It's about time that guy realised that you can't sit on the fence forever, especially when you're dealing with arrogant self-serving individuals who are unwilling to compromise or engage in meaningful honest debate. He should either man-up and join the fight or retire.

One of the reasons why ME patients in the UK face particular difficulties is because for years the only organisation representing us was the useless MEA. And essentially Charles Shepherd is the MEA.

However, he's largely an irrelevance these days. Thanks to the internet us "activists" can now take the fight directly to the enemy without having to deal with ineffectual middlemen like Shepherd.
 
Messages
646
Speculative psycho-analysing of unknowns ALLEGED to have committed crimes does not constitute a suitable, professional, effective response from the Medical Advisor of a patient organisation. Nor does the '50-100' quantification of alleged 'harassers'.

You are surely not disputing that Charles Shepherd has personal experience on which to base his 'quantification' - A Personal Statement from Dr Charles Shepherd http://www.meactionuk.org.uk/Dr_Shepherd_Statement.htm


One of the reasons why ME patients in the UK face particular difficulties is because for years the only organisation representing us was the useless MEA. And essentially Charles Shepherd is the MEA. However, he's largely an irrelevance these days. Thanks to the internet us "activists" can now take the fight directly to the enemy without having to deal with ineffectual middlemen like Shepherd.

Unlike 'you' activists (a description so inappropriate as to render the term 'activist' meaningless) Charles Shepherd is appointed by a representative body of a member organisation - the MEA has to do no more than fulfill its obligations to its members and comply with Charity Law, something which it appears to do with continuing effect. That there are those who are not MEA members, who are dissatisfied with the MEA and/or the MEA's medical advisor, is irrelevant, other than that intemperate attacks on either the MEA or Charles Shepherd, by non members, only serves to alienate further those people affected by M.E/CFS who view self appointed 'activists' as unrepresentative, manuipulative and harmful to the general interests of people affected by M.E/CFS.

IVI
 

Enid

Senior Member
Messages
3,309
Location
UK
And so it seems Pro Hooper was harassed by CS - see Concepts of Accountability. We suffer whilst the medical establishment should really put itself in order and accept research findings (international) far more advanced than our own in all matters ME.I don't doubt that there people here doing marvellous work by being "active"- not met any extremists amongst them whatever that means - if hold to their more knowledgeable position then yes.

http://www.meactionuk.org.uk/Documents_of_importance.htm
 

Angela Kennedy

Senior Member
Messages
1,026
Location
Essex, UK
Ok, thank you for bringing that up, IVI. I have tried not to get too personal about Charles Shepherd and his ACTUAL harassment of me, preferring to keep to specific issues around representation only, because of the 'emergency' situation this community is in with regard to the negative PR campaign Wessely et al are waging against it. But as you seem to wish to bring this out in the open, so be it.

So- I can tell you that what Shepherd says there is false. I have NEVER harassed Shepherd. I have publicly and legitimately critiqued various of his actions over the years. As we now know - legitimate objection and critique has been falsely conflated with alleged crimes in order to smear advocates in this recent negative PR campaign. Shepherd is actually doing the same thing in that statement.

In fact, Shepherd has harassed and intimidated me by email a number of times. He tried to get me sacked from my position as a university lecturer, without success, by telling untruths. He has complained to the British nurse registration about me in an attempt to get me struck off (my registration has lapsed because I am no longer a practising nurse, being an academic now). He once wrote me about 5-6 emails in one night- threatening me with the police, to the point I went to the police myself in order to assist with enquiries and demonstrate my innocence. He was implicated in an email campaign to attack both myself and Jane Bryant (the 'Hushman' campaign).

I can support ALL the above assertions with actual evidence. If you, or Charles Shepherd, or possible astroturfers or agent provocateurs, wish to continue down this line, I will be happy to publicise that evidence.

But let's address your assertions about advocacy and representation. Charles Shepherd, the MEA, AfME, other charities have not protected this community against an onslaught of slanderous allegations in the past 6 weeks or more. Not only do they currently appear incompetent, there appears to be some collusion - often to police the patient population and supporters by ad hominem and intimidation. It is clear though, in the current crisis, that more and more patients and their supporters have lost faith and patience with these organisations: have realised that they have no option but to self-advocate, and some - many- of the excellent responses we have seen from ordinary patients and their supporters to this current smear campaign puts the charities to shame. The inability (or reluctance) of Shepherd to protect his flock means the flock are doing without him.
 

Min

Guest
Messages
1,387
Location
UK
I hope everyone in the UK upset by the ongoing hate campaign against us will consider giving whatever they can afford (if they haven't already) , however little, to IiME's proposed Centre for Biomedical ME Research and Treatment,it seems to be the our hope for the future in my country

http://www.everyclick.com/letsdoitforme/info
 

Enid

Senior Member
Messages
3,309
Location
UK
Yes Min - already donated - they and ME Research UK the best we have. Hoping too the MRC research is all biomedical this time and no psyches like the days of yore !
 

Dolphin

Senior Member
Messages
17,567
Latest Spectator is up. But no sign of the letters page so far. Also, [STRIKE]last week's letter page is not showing up on search results now either[/STRIKE] (I saw it there last week and it still is there http://www.spectator.co.uk/politics/all/7189868/letters.thtml). [STRIKE]Hope this isn't a sign that they're taking down the letters page for a while[/STRIKE]. Perhaps if somebody sees a copy somewhere/is out and could check, they'd see if there are any letters.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
And just a point:
I used to carry a knife, a penknife, before such became practically banned by the lunatic system we have in the UK (grrr! Banning" things" NEVER bloody works, idiots!)
It was not carried as a weapon, for goodness sake, ti was just a freakin' tool I used a lot!
So, to say "someone was found with a knife" well that could mean anything becuse of the draconian laws...penknife, plastic knife? or was it someone found carrying a worktool they'd forgotten to place elsewhere?
or was it an actual person going after Wessely with intent to commit a crime, if so, that should be on record and easily verifiable.
 

Dolphin

Senior Member
Messages
17,567
2 letters published in Spectator

Well done to Anna (who I know) and K. (who Im not aware that I know)


Sir: I am pleased to read that Simon Wessely is `very proud of his achievements'. Unfortunately even he admits that at least a third of patients do not respond to CBT (cognitive behavioural therapy) or GET (graded exercise therapy). In fact this figure is likely to be much higher, as around a quarter of sufferers are housebound or bed-bound and therefore unable to access these treatments. And while the recent PACE trial showed some benefit to a small proportion of those involved, it only included those well enough to attend the hospital for appointments. A similar trial (the FINE trial) which involved nurses carrying out treatment in the home of patients who are severely affected showed absolutely no benefit. In the light of this, and despite Simon's hard work over the last 20 years, it is absolutely not surprising that the third of patients for whom these treatments do not work are demanding something more. Twenty years is a long time to be housebound, cut off from the world with not even a glimmer of hope their frustration is understandable. It is time to take a wider view of ME and expand research efforts to other specialist areas. These people want more and they deserve more.

Dr Anna Wood
Glasgow

Sir: I'm concerned that Simon Wessely and his colleagues have suffered harassment, but am also concerned that anyone who legitimately criticises their ideas and methods could be labelled as `extremist'. Simon Wessely fails to mention that there is an ongoing debate between the `biopsychosocial' model of CFS, favoured by psychiatrists like himself, and the biomedical model of ME/CFS, supported by many international researchers and clinicians. His article serves to raise the profile of one opinion whilst effectively stifling debate and dissent over treatment. For instance, he suggests that the treatments he recommends are effective, but doesn't acknowledge that this is contested by both large-scale patient surveys and a significant body of international research.

K. Wimhurst
Colchester