IS PROFESSOR SIMON WESSELY GUILTY OF MISLEADING

[Jarod]

http://www.angliameaction.org.uk/docs/wessely-misleading.pdf

Myalgic Encephalomyelitis (ME) has been recognised by the World Health Organisation (WHO) as a physical/neurological disease since 1969[1] and there is good scientific reason why the WHO does not conflate it with psychiatric 'fatigue syndrome'. Professionals and patients in the ME community are deeply worried about the ongoing influence of Professor Simon Wessely. There is justification in being pedantic about correct disease taxonomy and a full and fair representation of the scientific evidence-base. Both are vital to ensure correct diagnosis and genuine science-based research and treatment. Many believe that Professor Wessely has abandoned such basic professional principles and that abandonment has contributed to the mistreatment of many people with ME and to the death of at least one patient in the UK[2].

 

[snowathlete]

Many of uswould answer yes to that question. But it would be difficult to formally prove in this country.
I'd like to see someone take him to court and try though. If nothing else it would make the public aware of the true facts.

 

[Sasha]

Very interesting, thanks for posting.

The key thing about this document (the pdf is much longer) is that it is a call for a Parliamentary Select-Committee
of Inquiry.

 

[Enid]

I think the answer is yes and possibly the medical profession generally over years. Not so long ago I had to escape 3 A & E Docs and psychiatrist (collapsed at the time) being told it was "all in my mind".

 

[Sasha]

Actually, I can't find that document linked from the home page of that site:

http://www.angliameaction.org.uk/

I was wondering if this call for an inquiry is recent.

I can't see who is behind the site, either, though it's under construction with presumably more detail to come.

 

[In Vitro Infidelium]

Actually, I can't find that document linked from the home page of that site:

http://www.angliameaction.org.uk/

I was wondering if this call for an inquiry is recent.

I can't see who is behind the site, either, though it's under construction with presumably more detail to come.

This gives the name of Kevin Short http://www.angliameaction.org.uk/docs/PACE-Zombie-Science.pdf who was previously part of something called East Anglia ME Patients Partnership http://www.meactionuk.org.uk/Gibson_Short_051205.html

Anyone who found it difficult to work with Ian Gibson isn't exactly well qualified to advance Parliamentary action, given Gibson's commitment to M.E/CFS and his work on the APPG report http://www.appgme.org.uk/inquiry/inquiry.html. And a demand for a Select Committee enquirey is divorced from the reality of the way Parliament works. Which together with the fact that focus on the WHO classification is completely misplaced - (there's no requirement that any researcher or clinician has to define either research or treatment practice in terms of the WHO numbering system) makes this kind of 'call to action' just plain embarrassing.

IVI

 

[Sasha]

This gives the name of Kevin Short http://www.angliameaction.org.uk/docs/PACE-Zombie-Science.pdf who was previously part of something called East Anglia ME Patients Partnership http://www.meactionuk.org.uk/Gibson_Short_051205.html

Anyone who found it difficult to work with Ian Gibson isn't exactly well qualified to advance Parliamentary action, given Gibson's commitment to M.E/CFS and his work on the APPG report http://www.appgme.org.uk/inquiry/inquiry.html. And a demand for a Select Committee enquirey is divorced from the reality of the way Parliament works. Which together with the fact that focus on the WHO classification is completely misplaced - (there's no requirement that any researcher or clinician has to define either research or treatment practice in terms of the WHO numbering system) makes this kind of 'call to action' just plain embarrassing.

IVI

Thanks, IVI - presumably that will go nowhere, then.

 

[In Vitro Infidelium]

Thanks, IVI - presumably that will go nowhere, then.

The problem with these types of 'action' is that they raise people's hopes that 'something can be done' and then of course when there's no progress everyone starts feel "they aren't listening to us" and a self perpetuating bunker view results -more shouting from beind walls, that equally doesn't get taken seriously followed by more shouting, which gets the same blank reception and on and on.

IVI

 

[Sasha]

The problem with these types of 'action' is that they raise people's hopes that 'something can be done' and then of course when there's no progress everyone starts feel "they aren't listening to us" and a self perpetuating bunker view results -more shouting from beind walls, that equally doesn't get taken seriously followed by more shouting, which gets the same blank reception and on and on.

IVI

I understand that these things arise out of people's frustration and that if you're acting alone, it's good to feel that you have a chance of doing something - hence all those petitions on the 10 Downing Street site that never get enough votes - but to get something done at government level you need an organisation with other people.

 

[MeSci]

I disagree with IVI and think that this is a good action to take. I hope that as many people as possible will do it and not be deterred by one person's negative view. A friend of mine gave lengthy evidence to a select committee on the issue of disability. He was given a very respectful hearing, as is typically the case with independent witnesses.

You can read a bit about what select committees do here:

http://www.parliament.uk/about/how/committees/select/

and it has a section giving advice to witnesses.

Here is an example of things that the Health Select Committee gets involved in and what it can do:

http://www.publications.parliament.uk/pa/cm201213/cmselect/cmhealth/566/56604.htm#a1

Note this section on action to be taken on that particular issue:

"We welcome the Law Commission's proposal that the Health Committee should play a role in the accountability process for professional regulation in the health and care sector. We stand ready to work with the Law Commission to prepare workable proposals which make this accountability effective."

These committees are not toothless.

Out of interest, what type of action does IVI favour? I am rather puzzled by his/her statement "Anyone who found it difficult to work with Ian Gibson isn't exactly well qualified to advance Parliamentary action..."

This seems irrelevant to the action being advocated, which is for people to write to MPs and members of the House of Lords to ask the Health Select Committee to investigate government policy on ME. Gibson is not on the committee.

Try this page for another version of the call for action:

http://www.angliameaction.org.uk/docs/write-to-parliament.pdf

 

[alex3619]

One thing that is of concern is over how relevant Simon Wessely really is to all these issues. In recent years its Peter White who has done the most, and to a lesser extent Michael Sharpe. Wessely is increasingly becoming irrelevant, though has has become the iconic figurehead target for CFS advocacy and is still a strong spokeperson for BPS, psychogenic medicine, CBT and GET.

I have for several years been an advocate of enquiry aimed at ethical and regulatory/standards issues rather than legal issues which are much harder to prove. The emphasis though will be enquiry ... these things have to be established with evidence given to an enquiry, and if the terms of reference of the enquiry are inappropriate then even a good enquiry will be toothless. The terms of reference matter, and should any enquiry be started we have to push to open up the terms of reference as widely as feasible, or at least mot unreasonable lumber the enquiry with too many restrictions that halt its capacity to act.

I am not familiar with the type of enquiry discussed. What are the best places to read up on this?

Sections of my book may become mere reporting rather than proposing investigation should such enquiries be embraced.

It is very unlikely that an enquiry aimed at an individual will be permitted, though I could be wrong. Aiming it at the way this flawed psychogenic medicine is promoted might be more fruitful.

 

[Enid]

Of course he has mislead - it's been twelve years watching this pie in the sky mumbo jumbo holding up and influencing real medicine - that is the whole basis of my own docs doubting real illness.

 

[Research 1st]

Lets propose that there is proof of members of a profession misleading the public, in a hypothetical case.

Would a potential claimant have a hope in commencing legal proceedings at all? To begin with It would be unlikely any one individual (or group) would take an individual doctor to court over the medical and subsequent social mismanagement of ME CFS in any country.

In the UK, what a person, or group ,would have to do is sue a hospital trust responsible for where a doctor must be proven to have worked against the best interests of the patient (claimant) and where wrong-doing must be proven to have taken place with cast iron proof. Alleging and proving are of course, two entirely different things. Wit regarding medical law one will require hard proof. No lawyer/solicitor will take your case on to begin with because to build a case you must have confidence your evidence is robust and not able to be challenged.

No matter how honorable or understandable it may be for patients with ME CFS to feel discriminated against, the only realistic changes of court action is for actual patients who have directly suffered alleged harms to be taking action. Statistically this is unlikely to happen. As decades have past ME CFS sufferers (who were hospital trust patients in year xxxx) will now either be deceased or very disabled and bed ridden. (By the very nature of having an untreated neurological/immune illness over time). The exception to this rule is if they found an alternative treatment that worked or indeed, an alternative diagnosis that removed themselves from the ME CFS label.

If you could count these people on your finger able to do this, it's probably a handful at best. The people with apparent rock sold cases would by now be deceased from their untreated disease, either by natural causes or cancer, or would have regressed into intractable mental decline. This is generally, why no case has ever come to light..yet.

If for some reason some miraculous person with £50,000 burning a hole in their back pocket just happens to be a very well informed ex hospital trust patient and has a case to bring against a specific hospital trust they would usually have to demonstrate some of the below to even begin to start thinking they have a case:

1) You were harmed mentally or physically because on an individual's actions or a collective group of individuals. You must prove that since the alleged events you have developed a diagnosed mental illness, such as a personality change that you did not have prior to these events where any wrong-doing is alleged to have occurred. Or you now have a medical condition that was missed because you weren't believed at the time and no tests were given to you. e.g inflammatory damage to your organs.

2) The therapy was not appropriate /evidenced based for ME. (E.g. CBT, graded exercise is not evidence based for ME but there is some moderate evidence for fatigue syndromes of a psychiatric origin). This would only be possible for you to claim if you had evidence you had a neurological disorder at the time. For this you would have to have had tests, and you would need to have the test results in your possession. (MRI, EEG etc).

3) There was collusion between two or more parties to prevent you accessing appropriate care services whilst you were under their care. Vaguely possible to prove in my view and usually impossible. Doctors would rarely write letters with wild untrue allegations revealing what they think about you that coerce others to join this view. Doctors instead tend to meet in corridors and don't produce anything in writing that can be used against them, naturally. They are intelligent people. Medical training always teaches doctors to be polite or if critical, to be direct but simultaneously vague about statements being said about their patients. This is their get out clause. Part of the profession way of working and quite sensible too. Doctors also can speak in code and use medical euphemisms. Do you understand the jargon? Could you even proven that a double-meaning word actually is offensive or dangerous to you? Or could the person who wrote it say these words actually don't mean what you think they do. Some doctors are masters at word play. Denigrating medical euphemisms are rarely written in text also, again, usually speech that is not recorded in an archive (patient's letters).

4) There is a better alternative for the treatment you were given at the time. (E.g. Immunological drugs). Not possible to prove, again unless you had a diagnosis that was altered and for that diagnosis there was proven superior treatment. For example if you were refused gamma globulin treatment but later proved you did have immune suppression that wasn't checked for. gamma globulin treatment for 'ME CFS' wouldn't mean anything. The whole premise of a legal case such as is hypothetically proposed is to show that 'ME CFS' doesn't occur in yourself and instead you are afflicted by an un diagnosed organic disease hidden under the misdiagnosis of 'ME CFS' that was a label infused with controversy and disbelief.

5) The alleged false statements made against yourself/partner/family/friends/work colleagues in your medical records that you claim denigrated you are proven false. This is not hard to prove but takes an extensive amount of time and research. Usually years. You would need witnesses to sign a legal document to state that comments made about you/partner/family/friends are false. Otherwise it's nonfactual.

6) Evidence comes out that a group of victims ('patients') who have solid grounds for compensation because there is a theme of abuse, that is consistent with a claim, and involves the same group of medical professionals. This would be exceptionally rare, but is possible it may 'come out' one day, that a particular hospital trust, with a particular ward, with a particular group of therapists/doctors were getting up to things they shouldn't have been. If so then all of this, fundamentally, has to be proven as fact before the case can start.

Unless there was some media blitz of a malpractice or abuse (see ex TV celebrity Jimmy Saville scandal in UK children's Hospitals for a good example) then how would other ME victims know there are other people like them out there who also want to take legal action? They wouldn't know and they certainly would not discuss their cases on the internet due to privacy issues and agent provocateurs fishing for potential snippets of juicy information.

I would place a bet that this won't happen until at the very least there is an effective medication to reduced symptoms and allow people to exit their homes into the outside world and regather the energies to consider such things. That may take a long long time by which time the people alleged to be involved, will be retired or deceased themselves, meaning there never could be a 'trial'.

I would agree with others this is highly unlikely then for any doctor to be found ''guilty'', but it doesn't mean it is impossible especially if joint action is taken with novel methods of communication that are not through the internet where emails and other digital messages can be read.

What it takes, is a person (a sufferer with ME CFS) or a group of like minded people who:

1) Have sound medical and scientific knowledge.
2) Have actual evidence of apparent malpractice.
3) Can prove they have been mentally or physically harmed.
4) Have the financial stability to pursue a case that will cost at least tens/hundreds of thousands of pounds.
5) Do not attempt to start proceedings on the basis of emotions because they presume they are taking on something for the greater good. It must be a personal reason to right a wrong that is medically based not due to social movements.

 

[Enid]

It is misleading as the psychos have in the past (hysterias etc) and will continue to do so until real science (medical research findings) prove them wrong. The ignorance of psychos is numbered. Come and have a chat Gerada with family Neurologist, Radiologist, Paediatrics and be a better postion to advise GPs.

 

[self]

I disagree with IVI and think that this is a good action to take. I hope that as many people as possible will do it and not be deterred by one person's negative view. A friend of mine gave lengthy evidence to a select committee on the issue of disability. He was given a very respectful hearing, as is typically the case with independent witnesses.

You can read a bit about what select committees do here:

http://www.parliament.uk/about/how/committees/select/

and it has a section giving advice to witnesses.

Here is an example of things that the Health Select Committee gets involved in and what it can do:

http://www.publications.parliament.uk/pa/cm201213/cmselect/cmhealth/566/56604.htm#a1

Note this section on action to be taken on that particular issue:

"We welcome the Law Commission's proposal that the Health Committee should play a role in the accountability process for professional regulation in the health and care sector. We stand ready to work with the Law Commission to prepare workable proposals which make this accountability effective."

These committees are not toothless.

Out of interest, what type of action does IVI favour? I am rather puzzled by his/her statement "Anyone who found it difficult to work with Ian Gibson isn't exactly well qualified to advance Parliamentary action..."

This seems irrelevant to the action being advocated, which is for people to write to MPs and members of the House of Lords to ask the Health Select Committee to investigate government policy on ME. Gibson is not on the committee.

Try this page for another version of the call for action:

http://www.angliameaction.org.uk/docs/write-to-parliament.pdf

Here Here MeSci!
All I can say is well done to whomever it was that compiled that pdf . Ok It may be true that it has no real chance of being effective but there is more going on here. With so little wider recognition of our desperate plight documents like that will inspire us to carry on. To see the incredibly unjust situation spelled out and defined with a request for an inquiry into Wesselys influence is a positive rather than negative, I think the more we all make our case in whatever arena the better. There is still a shocking amount of ignorance amongst the medical profession and general public. When they hear about the influence of the psychiatric lobbiy and their 20 years of manipulating perception they are often incredulous. I remember when I became ill in 1984 and I had no forums or people to get support from and the thought of someone attempting to present our case in parliament was light years away. After 28 years of this illness and always believing that I would get better, my life is in pieces, And they tell me that im ill because of what i believe!!!!!!! I believe we will have our day in court, I just hope its soon though because I am traumatized and angry after abuse from sections of the medical profession. (sorry if I went off the topic a bit).

 

[alex3619]

There is a point to making requests for this kind of enquiry even if it never goes ahead. It brings attention to the issues, and it serves notice that things have progressed far enough that legally appropriate action is being considered (though not necessarily legal action). A public enquiry is one way to go. Increasing accountability within the medical profession is something I have been looking at for a while now. Its sorely needed.

 

[MeSci]

There is a point to making requests for this kind of enquiry even if it never goes ahead. It brings attention to the issues, and it serves notice that things have progressed far enough that legally appropriate action is being considered (though not necessarily legal action). A public enquiry is one way to go. Increasing accountability within the medical profession is something I have been looking at for a while now. Its sorely needed.

Re your earlier message, alex3619, have you checked out the links in my last message? They tell you a lot about select committees. You can watch coverage of select committee proceedings on the BBC Parliament channel some days (e.g. weekends) and they can also be viewed online, here for example:

http://www.bbc.co.uk/programmes/b0070w64?oo=0

Some are very boring, but they look at facts so can be very dry. There's none of the silly point-scoring and heckling often seen in TV coverage of the House of Commons. They're not public inquiries other than the facts that footage can be viewed, and proceedings can be read, published, etc., - there are no public galleries as far as I know. They are quiet proceedings.

I think Anglia MEAction may have recognised that the focus of their original call to action was too personalised. The title of the new one (see last link in my previous message) is much better and doesn't mention anyone by name, and nor does the pre-drafted text - it just calls for
"an urgent, broad-ranging, independent, open and thorough inquiry into UK Government policy on and matters concerning the illness Myalgic Encephalomyelitis (ME)."