Category: GSRME

BBC Midlands video: Woman with ME takes own life, edited

The video report on the BBC Midlands web page has been edited since last night.

View: Woman with ME takes own life

Additional footage has been included and the video is now 1.38 mins duration.

Instead of:

“[Mr Logan] echoes a Parliamentary report that not enough money is going into finding out whether it is an illness of the body”.

The voiceover at 0.59 now says:

“…for twenty years, he [Mr Logan] has battled with ME and backs the need for more research into possible physical causes of the condition…”

The reference to a “Parliamentary report” has now been dropped [ see previous posting here ]

The BBC journalist covering this story is Mr Michele Paduano:

BBC News: Woman with ME takes own life

BBC News, Midlands: Woman with ME takes own life

This is a video report from the BBC [1.32 mins]

“A 43-year-old woman suffering from the condition ME has travelled to Switzerland to take her own life because of the pain.”


Note: Mr Ian Logan, an ME sufferer who features in the video, was in contact with the subject of this report.  Mr Logan is Chairman of the Worcestershire M.E. Support Group

The reporter states that Mr Logan “…echoes a Parliamentary report that not enough money is going into finding out whether it is an illness of the body”.

The “Parliamentary report” is not referred to by name, but it is likely that Mr Logan is referring to the Gibson Report.  If this is the case, the status of the “Gibson Report” has once again been misrepresented in the media.

The “Gibson Report” is an unofficial document produced by an ad hoc committee of parliamentarians; it was not the product of a Select Committee or a Standing (now General) Committee, nor did the report result out of a commissioned inquiry. The document should not be described as a “Parliamentary report” and it has no status within either of the Houses of Parliament or within government.  

For more information on the status of the “Gibson Inquiry” and the report the GSRME panel published, electronically, in November 2006 see:

I am not at all comfortable with the phrase “…not enough money is going into finding out whether it is an illness of the body.”

MP3 of broadcast, BBC Radio Norfolk, 19 June

The ME Association News page has flagged up an MP3 download of the first segment of the strand on ME which was broadcast on BBC Radio Norfolk “Breakfast with Bumfry” show, on Thursday, 19 June.

The MP3 can be downloaded from the You Send It site, here:

norfolk.mp3 (7344 KB)

For a transcript of this segment jump to:

Transcript: BBC Radio Norfolk, Ian Gibson, May 2007

In May 2007, Dr Ian Gibson MP had taken part in another broadcast of the Stephen Bumfrey show, in a strand on ME for ME Awareness Week:

First published on the Co-Cure emailing list on 23 May 2007 

THE FOLLOWING IS AN UNOFFICIAL TRANSCRIPT OF AN EXTRACT FROM THE STEPHEN BUMFREY SHOW, RADIO NORFOLK (UK), 11 MAY 2007. WHILE CARE HAS BEEN TAKEN IN TRANSCRIBING THIS EXTRACT, SOME ERRORS MAY REMAIN (although the absence of Dr Ian Gibson’s answers to the questions concerning the petition by “M.E. Support-Norfolk” is not an error of transcription):

Transcript prepared by John Sayer
23 May 2007

Stephen Bumfry (presenter): So if you’re on Gentleman’s Walk in Norwich on Saturday, you may be asked to sign a petition organised by a Norfolk M.E. support group. Well, Ian, you can tell us more about this, can’t you?

Ian Gibson: Yes, well, a couple of years ago I got visited by some people from Norfolk and from Norwich who were concerned about the government’s position on M.E. and treatment centres and their whole attitude to it and many people didn’t believe that M.E. existed – it was just, you know, people making it up and so on; it certainly does when you meet constituents and I met a lot of people and started an inquiry off.

Now, it wasn’t a perfect inquiry, in the sense that we didn’t have a lot of administrative help and so on, but we’ve got a report out. I got people from the Lords and the Commons and we interviewed people including government ministers on the issue and what we’ve found is that some of the patient groups, now support groups, of which there are quite a few, are working better together, where there had been a bit of rivalry before now they’re working together.

We’re also thinking about putting in a big grant request for biomedical research – there’s an argument whether it’s a sorta psychological illness or biomedical and we came down very much on the biomedical side and said that we really do need some research in that area.

Stephen Bumfry: Didn’t it used to be called “yuppie flu” when it started?

Ian Gibson: Well, that was when it started. Yeah, “yuppie flu”…

Stephen Bumfry (talking over): Yeah, when it was first identified.

Ian Gibson: …well, that gave the game away. It was just people finding reasons for taking a day off work. It’s nothing like, some people are seriously ill…

Stephen Bumfry (talking over): Tell us about the symptoms. I mean, how bad can it be?

Ian Gibson: Well, it, I mean it varies in different people but, I mean, it can be much, it can put people right out of action. It can be, in bed for weeks and they just feel generally ill, muscular problems and so on and just feeling really down. I mean, the flu kind of symptoms kinda describe some of the symptoms but the weakness of people needed some kind of approach medically and the medics in general just thought that some kind of cognitive therapy would be good enough. Well it helps but it’s not good enough. We need to have a real understanding of what causes it.

Stephen Bumfry: Do you think the petition’s gonna make any difference?

Ian Gibson: Yes I think there’s been an awareness week of it and I think our report will make a difference. We had a meeting in London and lots of people are feeling more confident now about moving it on. We’ve had people from Canada and the States over, telling us about what they’re doing there and I think there’s a new excitement in the field and perhaps within – shake government up to do something about supporting it. The treatment centres are very important and there is a possibility of the one in East Anglia disappearing and losing it’s leadership and so on, and we’re fighting to keep  that.

Transcript: BBC Radio Norfolk, Thursday 19 June 2008


This transcript has been prepared by Suzy Chapman and is not an official BBC transcript. Although care has been taken to produce a fair and verbatim record, some errors and omissions may remain. This transcript may be reproduced in full or in part as long as the author and the source is credited and on condition that it is published with this disclaimer.


BBC Radio Norfolk
“Breakfast with Stephen Bumfry”  

7am to 10am, Thursday 19 June 2008

[The first segment in this ME strand started at approximately 7.20am and continued to 7.29am.]

Stephen Bumfry: People with ME in Norfolk have been handed a life-line. Victims of the chronic fatigue syndrome have won a significant legal victory after a top judge declared it “in the public interest” for the High Court to rule on claims that treatments being offered on the NHS are potentially fatal.

Two people, including Kevin Short from Norwich, have fought for this move. Speaking to BBC Radio Norfolk, Mr Short’s lawyer, Jamie Beagent said “It is a huge step.”

Jamie Beagent: It’s great news for our clients and for the wider ME community – we are actually overwhelmed with messages of support and thanks that we’ve received since the hearing, so it is very good news. Nice actually fought, defended the claim vigorously and they’ll obviously be disappointed by the result because now we will have a proper review carried out by the High Court into the procedures that went into the production of the Guideline and that, as I say, with the potential that the Guideline will actually be quashed, when it finally does come to Court.

Stephen Bumfry: And Mr Beagent says while it’s some good news, there’s still some way to go until a full High Court hearing in the Autumn.

Jamie Beagent: Well, the Court will be looking at the process that brought about the publication of the Guideline in August, last year. The crux of our argument is that the evidence which NICE based their conclusions upon was skewed very heavily in favour of the psychiatric school and in particular, the randomised controlled tests which were relied upon, we consider were entirely inadequate – they were very small in number – I think only seven tests, trials carried out in relation to CBT and five in relation to Graded Exercise Therapy.

Stephen Bumfry: Now if you or someone in your family is affected by ME and you’d like to get in touch with me, here on “Breakfast with Bumfry”, pick up the phone now – 01603 617 321 or text 07786 200 951. Lynne, I know someone in your family’s been affected – we’ll hear what they’ll have to say very, very soon…”

Lynne McKinley (programme producer): Absolutely…

Stephen Bumfry: Dr Ian Gibson is Kevin Short’s local MP and he joins us on the line now. Dr Gibson, Good morning.

Ian Gibson: Good morning.

Stephen Bumfry: How did you first become involved with the campaign?

Ian Gibson: Well, I mean, Kevin and I first had a discussion about the whole business of ME, and he persuaded me that it was something worth taking up and the way I approached it was to call for an inquiry in the House of Commons, which I set up with members in both Houses and we produced a Gibson Inquiry report which, your know, went a long way, I think, to helping people see that there were some real problems in this issue – you speak at meetings about the Report and so on…

It’s a very combative field – there’s a lot of argument, a lot of dispute about what’s known and what’s not known, but certainly I think, we helped raise the profile of ME as a serious illness, which seriously afflicts people and has to be taken, you know, right up into the echelons of a new illness which hasn’t been addressed properly by the medical profession…

Stephen Bumfry: Well, just describe to me what ME means and what the symptoms are…

Ian Gibson: Well, I have met constituents who have very depressed days when they can’t move, when they can’t get out of the house, and so on…For some people it’s very, very serious, that goes on for quite a long time – it might go on for their whole lives. Other people recover and can go out of doors, can maybe even stagger to work but it’s certainly not something that is manageable without proper treatment.

Stephen Bumfry: Now, I know that this condition has been dubbed “Yuppie Flu” – which is very unfortunate…

Ian Gibson: Yes. That was the meaning, I think. I think that was the attempt to say “Oh, dear, they’re just making it all up – it’s artificial.” Completely, completely untrue. There’s I think 250,000 people in this country who have symptoms of ME, different gradations of it, as I pointed out.

Quite often GPs miss it, don’t recognise it, don’t see it, just think it’s a temporary thing – just go home, have a couple of days in bed and you’ll be alright, again. Now that’s not their fault – it’s just that it’s never been taken seriously by the medical profession – whereas it has been in other parts of the world – the World Health Organisation has recognised that it is a neurological disease, that there may be factors like viruses, and other agents present – that it’s more biomedical than psychiatric and that has not been the prevailing thinking of the people in the medical professional.

So now…now this decision really helps us move that on and to say look NICE have made a decision based very, very much on the psychiatric analysis and there is plenty of evidence…massive amount of evidence now to suggest that it’s more complicated than that…

Stephen Bumfry: So your campaign has a got a bit of momentum, now, then?

Ian Gibson: Oh, yes. It’s got a momentum…we will support…there are many different groups in this field who argue about the different causes of it in terms of which agents might be involved…the problems with children and particularly with adults. It’s very combative, everybody has little arguments about it…what it really does need is a huge investment into research to find out what the cause is and we have been pleading for that for some time.

We have got the scientists and medics who are interested in this field together…they’re be putting together an application in conjunction with people in Canada and other countries who are interested in this, who’ve done some research but certainly need a huge injection of resource to get this settled once and for all.

NICE’s decision is what’s being challenged. Without all that evidence, it’s pretty poor, I think, to come out with the decision that they have and I’m very grateful that Kevin and a friend of his have challenged the ruling by NICE. In fact, I’m seeing, in an hour’s time, the Chairman of NICE, Sir Michael Rawlings, who’s a friend of mine, and we’ve had lots of arguments about drug availability for cancers and other things where NICE has been involved to make the assessment of the evidence and I shall talk to him about ME and say “Come on, don’t you really think we need to have a proper study carried out on this now, before you make decisions…”

Stephen Bumfry: We’ve got Lynne McKinley producing the show in the studio, Dr Gibson, and a member of Lynne’s family is affected by ME – Lynne…

Lynne McKinley: Absolutely. I know my nephew Rob has had ME for sixteen years. Actually, I did actually send him a copy of the High Court ruling ‘cos I thought he might be interested in seeing this and he said – well, this is what he emailed back to me:

“The bottom line is that until more biomedical research is carried out to understand the condition the arguments will continue to rage.”

He said, “It’s depressing to acknowledge just how little progress has been made in the sixteen years since I’ve been unwell. Two weeks ago, I went up to South London to give blood for Dr Jonathon Kerr’s research project…”

Ian Gibson: Excellent work, excellent biomedical work…

Lynne McKinley: “…abnormal gene expression in ME patients. I’m sure it’s through scientists like him that the real breakthroughs will be made.”

And so obviously, my nephew is very much a fan of Dr Kerr. But I can almost feel his frustration – sixteen years with ME…

Ian Gibson: Oh, absolutely…I can replicate that story many times over – it’s an absolute disgrace and appalling that it has been unacknowledged as a serious, serious condition which the medical profession really should have taken up. It’s up to government now to take a serious look at the whole situation and inject some money into it. The fight back starts here, again, for the hundredth time…we keep pushing at it and just now and again, this just shows you, if you give up, you know you’ll get nothing, you’ve gotta keep pushing and suddenly there’s a break somewhere.

Stephen Bumfry: Lynne, just briefly, then…

Lynne McKinley: The other thing that Rob just mentions in his email, he says some of the charities like ME Research UK and CFS Research Foundation, they’re raising money for biomedical research, just, you know, worth a mention, and I guess, you know, anybody that has a member of the family that has ME will understand the importance of supporting…

Ian Gibson: Fair comments…fair comments..

Stephen Bumfry: Dr Ian Gibson, MP for Norwich North, thank you very much for joining us this morning…

Ian Gibson: Thank you very much.

Stephen Bumfry: And if its affected you or someone in your family in any way, shape or form – 01603 617 321 or you can text me and that’s 07786 200 951, give us a shout here on “Breakfast with Bumfry”.



NICE JR lawyer and Ian Gibson speaking on BBC Radio Norfolk

I have prepared a transcript of the first segment of this ME strand – jump here:


This morning,  Mr Jamie Beagent, lawyer for Kevin Short, and Dr Ian Gibson MP, were speaking via phone link on BBC Radio Norfolk about yesterday’s court decision.

The programme was the Breakfast with Stephen Bumfry show (Thursday, 19 June) which runs for three hours, from 7.00am.

Listen again for 24 hours only at:

BBC Radio Norfolk 19 June 2008

‘Breakfast with Stephen Bumfry’ show.

7am to 10am

Mr Jamie Beagent (Mr Kevin Short’s lawyer) was speaking via phone link 20 mins into the programme for a couple of minutes.

Dr Ian Gibson MP was speaking via phone link 22 mins in from the start – to 29 mins from start of programme.

The producer of the programme intersperses Dr Gibson to talk about her own nephew who has suffered from ME for many years and she reads out comment from her nephew’s email.

Listeners with ME were invited to phone in with their experiences of the illness.

I’m not able to give the times when this strand was returned to throughout the programme after Dr Ian Gibson had finished speaking.


ME in Parliament: May 2008

Thanks to Dr. Marc-Alexander Fluks for compilation

Source: UK House of Commons
Date: May 6, 2008

[Written Answers]

Incapacity Benefits: Chronic Fatigue Syndrome

Dr. Gibson

To ask the Secretary of State for Work and Pensions what assessment he has made of the impact of (a) the Welfare Reform Act 2007 and (b) new guidance on the disability living allowance on the granting of benefits to people with myalgic encephalopathy. [201838]

Mr. Timms

The Welfare Reform Act 2007 contains provision for the creation of the new employment and support allowance. This will be supported by the new work capability assessment.

The work capability assessment will be a fair, robust and accurate assessment of limited capability for work which takes account of all conditions, including those that are long term and that fluctuate such as myalgic encephalopathy.

Employment and support allowance will replace incapacity benefits for new claimants from October 2008. No assessment of its impact can be made yet.

Updated medical guidance on myalgic encephalopathy for disability living allowance decision makers was published in July 2007. No assessment has been made of the impact of the guidance on entitlement to disability living allowance for people with myalgic encephalopathy.

(c) 2008 Parliamentary copyright


Source: UK House of Commons
Date: May 7, 2008


[Written Answers]

Chronic Fatigue Syndrome

Dr. Gibson

To ask the Secretary of State for Health what assessment he has made of the effects on services for children and young people with myalgic encephalopathy of the closure of specialist units in (a) Leeds, (b) the Lister hospital, Stevenage and (c) St. Thomas’s hospital, London; and if he will make a statement. [201831]

Ann Keen

We have made no assessment of the impact on services for children and young people by the closure of these specialist units. Local health bodies have a duty to commission health and social care services to meet the needs of their local population, including those living with chronic fatigue syndrome/myalgic encephalomyelitis.
(c) 2008 Parliamentary copyright 


Ed: In November 2006, the GSRME issued a press release to launch the Report of the GSRME (“The Gibson Report”):

Extract from GRSME Media Release, embargoed until 10pm Sunday 26th November 2006

“NICE has just finished consulting on their draft guidelines for treating CFS/ME. These guidelines have been widely criticised by patient groups and by the APPG on ME. Chair Des Turner described them in a meeting last week as ‘not fit for man nor beast’ Dr Ian Gibson MP of the Inquiry described them as ‘useless’.

On 7 May 2008, Dr. Gibson tabled a written question:

“To ask the Secretary of State for Health what steps he is taking to (a) ensure implementation of the National Institute for Health and Clinical Excellence’s guidelines on the treatment of myalgic encephalopathy (ME) published in August 2007.”

On whose behalf has Dr Gibson raised this question?

Has Dr Gibson done a volte face and does he now consider the NICE CFS/ME Guidelines to be fit for purpose and suitable for implementation?  Is Dr Gibson now endorsing the NICE CFS/ME Guidelines?

Source: UK House of Commons
Date: May 7, 2008


[Written Answers]

Chronic Fatigue Syndrome

Dr. Gibson

To ask the Secretary of State for Health what steps he is taking to (a) ensure implementation of the National Institute for Health and Clinical Excellence’s guidelines on the treatment of myalgic encephalopathy (ME) published in August 2007, (b) reduce the time taken to diagnose ME, (c) increase the allocation of funds for research into ME and the delivery of effective care and treatment, (d) reduce inconsistencies in levels of ME care across primary care trusts and (e) assess the availability of services to (i) children and (ii) adults with ME. [201832]

Ann Keen

Health professionals are expected to use their clinical judgement taking into account best practice and existing clinical guidelines, including those produced by the National Institute for Health and Clinical Excellence (NICE), to provide the most appropriate treatment for the individual living with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

Diagnosis for CFS/ME can be prolonged as there is no specific test for this condition and other diseases with similar symptoms must be ruled out before a diagnosis can be made. The NICE guidance provides a list of medical tests that should be used to rule out other conditions.

The Medical Research Council is responsible for allocating funding for medical research, and does not ring-fence funding for specific conditions. Funding for individual research proposals is based on an assessment of the quality of each proposal by an independent panel. Local health bodies are responsible for commissioning health and social care services to meet the needs of their local population living with CFS/ME.

(c) 2008 Parliamentary copyright


Source: UK House of Commons
Date: May 7, 2008


[Written Answers]

Chronic Fatigue Syndrome

Mike Penning

To ask the Secretary of State for Health (1) what steps his Department is taking to ensure primary care trusts meet the recommendations of the new guidelines on myalgic encephalomyelitis/chronic fatigue syndrome produced in August 2007 by the National Institute for Health and Clinical Excellence; [202244] (2) what steps his Department is taking to reduce the time taken to diagnose myalgic encephalomyelitis/chronic fatigue syndrome. [202245]

Ann Keen

Health professionals are expected to use their clinical judgment taking into account best practice and existing clinical guidelines, including those produced by the National Institute for Health and Clinical Excellence (NICE), to provide the most appropriate treatment for the individual living with chronic  fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

Diagnosis for CFS/ME can be prolonged as there is no specific test for this condition and other diseases with similar symptoms must be ruled out before a diagnosis can be made. The NICE guidance provides a list of medical tests that should be used to rule out other conditions.

(c) 2008 Parliamentary copyright


Source: UK House of Commons
Date: May 8, 2008


[Written Answers]

Chronic Fatigue Syndrome: Health Services

Dr. Desmond Turner

To ask the Secretary of State for Health what steps his Department plans to take to ensure that the recommendations for research into myalgic encephalomyelitis/ chronic fatigue syndrome in the new National Institute for Health and Clinical Excellence guidelines are met, with particular reference to the (a) causes of the illness, (b) effectiveness of intervention strategies and (c) efficient ways to deliver domiciliary care for people who are severely affected. [203962]

Dawn Primarolo

Research recommendations made in National Institute for Health and Clinical Excellence (NICE) guidelines are considered on behalf of the Department by the National Institute for Health Research Health Technology Assessment programme (HTA). The director of the HTA programme meets annually with NICE for this purpose. The next of these joint meetings will be held in September.

(c) 2008 Parliamentary copyright


Source: UK House of Commons
Date: May 9, 2008


[Written Answers]

Chronic Fatigue Syndrome

Mr. Llwyd

To ask the Secretary of State for Health what steps his Department plans to take to ensure that recommendations on research into myalgic encephalomyelitis and chronic fatigue syndrome, such as those outlined in the guidelines recently issued by the National Institute for Health and Clinical Excellence, are met, with particular regard to (a) the cause of the illness, (b) the effectiveness of current intervention strategies and (c) identification of efficient ways to deliver domiciliary care for those who are severely affected. [203520]

Dawn Primarolo

I refer the hon. Member to the reply I gave the hon. Member for Sutton and Cheam (Mr. Burstow) on 29 April 2008, Official Report, column 252W.

(c) 2008 Parliamentary copyright


Monday 2 June 2008 at 2.30pm: Oral Question in the House of Lords

Countess of Mar to ask Her Majesty’s Government whether the current NHS Review will include consideration of chronic fatigue syndrome/myalgic  encephalomyelitis (CFS/ME) as a long-term neurological condition.


Professor Simon Wessely: Retired, tired or hired?


From Suzy Chapman & Ciaran Farrell

14 April 2008

Professor Simon Wessely: Retired, tired or hired?

Unless you’ve had your head stuck in a bucket for the past four weeks, you’ll be most likely aware that one of the several psychiatrists whom Dr John Scadding invited onto his CFS Conference Planning Group, is Professor Simon Wessely.

Simon Wessely (KCL) and fellow Planning Group members, psychiatrists Peter Denton White (BARTS, PI PACE Trials) and Mathew Hotopf (IoP), have all invited each other to be speakers at this CFS conference. It’s all very cosy.

We are sure fellow psychiatrists are delighted that Professor Wessely has come out of his “retirement” from CFS research not only to sit on the Planning Group for this meeting but to also address the conference, itself.

Professor Simon Wessely will speak on Epidemiology at 10.55am, following Dr Anthony Cleare (IoP) and before Professor Chris Dowrick who, incidentally, is a member of the FINE Trial research group.

On 20 September 2001, the Guardian published an article by Health Editor, Sarah Boseley, quoting Professor Wessely: 

Storm brews over ‘all in mind’ theory of ME 

The article is still available and we recommend that you read it – it’s quite short.,3604,554693,00.html

In this exceedingly emotive piece of journalism, Ms Boseley reported:

“Prof Wessely has quit the field – and is not the only professional to have ceased involvement with CFS.”

Remember, this was reported in September 2001, over six years ago.

More recently, in November 2006, the Group on Scientific Research into ME (GSRME) reported:

“[…] Wessely gave up the [CFS] research side of his work…”
[Report of the GSRME: Page 19, Section 3.2 Other Evidence We Received: Prof Simon Wessely]

So we were interested to see that Professor Simon Wessely has had another new paper published, this March, in the Journal of Psychosomatic Medicine. One of his co-authors is Professor Matthew Hotopf, Institute of Psychiatry, London, a fellow member of the RSM CFS Conference Planning Committee who is also addressing the meeting, on the topic of “Assessment: psychiatrist’s approach”.

You can read the Abstract of Professor Wessely’s latest paper here:

Journal of Psychosomatic Medicine
Etiology of Chronic Fatigue Syndrome: Testing Popular Hypotheses Using a National Birth Cohort Study: Samuel B. Harvey , MRCpsych, Michael Wadsworth , PhD, Simon Wessely , MD, Matthew Hotopf , PhD. Published online before print March 31, 2008

Professor Wessely has also had an additional paper published in March 2008 – this one in the Journal of Psychosomatic Research.

In September 2007, we wrote to Dr Ian Gibson MP, former chair of the since disbanded GSRME group (known colloquially as the “Gibson Group”).

Amongst a number of questions we put to Dr Gibson in relation to specific claims his panel made in their report, under Section 3.2 Other Evidence We Received, we asked:

1] Would you please provide a reference source for the panel’s statement that Prof Wessely has given up the [CFS] research side of his work?

2] Would you please confirm the date beyond which Prof Wessely was understood by the GSRME panel to have ceased undertaking research studies in the field of CFS research?

Either Professor Wessely had retired from CFS research prior to the Gibson Inquiry or he had not retired; we considered that having chaired the GSRME Inquiry, Dr Gibson was accountable for what his panel had written in their report and that he should be happy to provide a definitive reference for the hitherto unreferenced claims the GSRME panel had made in Section 3.2.

But Dr Gibson was unable to provide us with a reference source nor could he provide us with a date by which Professor Wessely was understood by the panel to have given up the CFS research side of his work.

Although he had been invited to do so, Professor Wessely chose not to present Oral Evidence or send in a Written Submission to the inquiry being undertaken by the GSRME, in 2006.

Instead, Professor Wessely sent a very lengthy letter to the GSRME panel.

The purpose of this letter and its contents were never defined or disclosed by the GSRME, nor has it ever been made clear whether parts of the panel’s largely unreferenced report were based on information contained within this letter – a letter which, in our opinion, should have been disregarded for the purposes of the inquiry and not used in any way by the panel to inform themselves, since this document had not been received through the proper channels and sat outside the material submitted under “Written Submissions” to the inquiry.

Nevertheless, the GSRME panel does allude to opinions expressed by Professor Wessely, originating from this letter, in Section 3.2 of its report.

In the absence of a reference in the report, itself, it occurred to us that the claim that Professor Wessely had given up the [CFS] research side of his work might also have originated from the content of Professor Wessely’s letter and we asked Dr Gibson for a clarification.

But Dr Gibson has been unwilling to confirm or deny whether the claim made in the report had been based on information contained within the letter his panel had received.

What Dr Gibson has told us is that the GSRME panel considers that the letter sent to them by Professor Wessely was a piece of personal correspondence never meant for the public” and that in Dr Gibson’s opinion, it should remain that way and that Professor Wessely was said to be in agreement with Dr Gibson that the letter should not be released.”

Why did Professor Wessely submit a lengthy missive to the GSRME panel which was considered by himself and the GSRME to be a piece of personal correspondence never meant for the public” in lieu of tendering a Written Submission in an open and transparent manner through the official channels, for what was intended to be a “public” inquiry?

We considered it disturbing that Professor Wessely felt the need to set certain information, views, opinions or other material before a panel of parliamentarians engaged in an unofficial inquiry but that he did not feel he should be equally open and transparent with the ME community and the wider public.

It is not unknown, of course, for this type of practice to go on in relation to inquiries – whether it is acceptable or in the public interest is another matter.

If material contained within “the Wessely letter” had been used to inform the panel in the writing up of their report or in any way shaped their own views and opinions, it is not possible for the inquiry’s constituency of interest, that is, the ME community, or the wider public to assess whether the GSRME panel had made a fair and reasonable evaluation of the content of this communication, since the document is not being made available for public scrutiny.

Since neither Dr Gibson, nor apparently, Professor Wessely, has been willing to release this document to us, we have been unable to establish whether this letter was the source of various contentious statements made by the panel within Section 3.2 of their report.

With no reference source to confirm the GSRME’s claim forthcoming, the true status of Professor Wessely’s involvement in the field of CFS research has therefore been left hanging by Dr Gibson and his panel, and this and other unreferenced statements contained within the “Gibson Report” remain unsubstantiated and cannot be relied upon.

In his final response to us on these matters, Dr Gibson made the suggestion thatin order to see what sort of output a scientist is producing [we] might want to look on Medline and also the home pages of their institution.”

We were somewhat bemused that rather than simply confirm his panel’s source for the basis of the statement in question, that Dr Gibson suggests we go and carry out our own researches by trawling databases like PubMed and the websites of the institutions with which this Professor is associated!

By setting us the task of proving or disproving claims made within the Report, it suggested to us that perhaps Dr Gibson is no longer quite as confident as he was in the reliability of the claims his panel had made in 2006.

We had, of course, done our homework before contacting Dr Gibson.

Put “Wessely, Simon” in the search field of PubMed and you will find that there have been numerous published studies on CFS co-authored by Professor Simon Wessely since 2005, when the GSRME panel first put out a call for written evidence to be submitted to its inquiry.

There have been 14 papers published by Professor Wessely in the field of CFS research since Spring 2005, alone, the latest, as already mentioned, published within the last two or three weeks.

Carry out a search from 2002 onwards, and out of 136 papers listed on PubMed for Simon Wessely, 25 are in the area of “CFS” or overlapping studies – not a bad output for someone who, in 2001, was said to have already quit the field!

Allowing a couple of years for any ongoing studies to reach their completion dates and adding on another year, say, for publication of papers, then we might have anticipated that by around 2004, Professor Wessely’s output for CFS studies would have all but ceased.

But Professor Wessely appears to have been beavering away on study after study, publishing paper after paper, with yet another two out this March.

Rather than having given up “the [CFS] research side of his work”, as claimed in the Gibson Report, Professor Wessely appears to continue to combine CFS research with his other areas of interest.

So what motivates Professor Wessely to claim to have quit CFS research, when in reality this would appear not to be the case?

In the 2001 Guardian article Ms Boseley quotes him as saying:

“There are many who have found themselves vilified and…have joined the ranks of others who have been abused and intimidated for producing research unpopular to powerful special interests.”

The following week, Ms Boseley had written:

“Simon Wessely, of the Department of Psychological Medicine at Guy’s, King’s and St Thomas’s School of Medicine in London, is a former key figure in the study of ME/CFS who has felt the heat and largely backed out of the kitchen.”
[A very modern epidemic, Guardian, 27 September 2001],,559001,00.html

The GSRME panel made similar, entirely unreferenced claims in its own report that:

“[…] Wessely gave up the research side of his work possibly due to extreme harassment he received from a very small fringe section of the ME community.”
[Report of the GSRME, Page 19, Section 3.2]

But my colleague, who had engaged Professor Wessely in conversation after he had delivered his 2006 Gresham College lecture, relates that if he understood the Professor correctly, Wessely had sought to convey that he felt there was only very limited scope for further work in his particular varieties of CFS research studies within the overall sphere of CFS research. He expressed the view that he wanted to move away from CFS research and into other, broader and more historical research, involving neurasthenia, chronic fatigue and other historically based diagnostic entities. Therefore, it would appear that Professor Wessely was seeking new and fresher pastures to research.

So, had the Professor quit CFS research prior to the 2001 Guardian articles because he could no longer stomach the vilification he alleges he is subject to? The results from PubMed don’t support this.

Or has he merely tired of the area of CFS research but it suits his purpose to provide journalists with a more catastrophic rationale for allegedly having given up his work in this field?

One cynic has suggested that perhaps Professor Wessely moved out of the area of CFS research some years ago, but is lending his name and the kudos it attracts to the research studies of others.

It is a pity that Professor Wessely declined an invitation to speak at one of the Gibson Inquiry Oral Hearings because we are certain these are questions that many of those present would have been vying to put to him.

It is also unfortunate that members of the public are being excluded from the RSM’s Conference on 28 April because that would have presented another opportunity for Professor Wessely to explain to the ME community, to members of the RSM, to medics and attendees from the health care professions how come so many papers have been published in his name, since 2002, when he was already claiming to have “quit the field”.

Perhaps Professor Wessely ought to clarify the content of the briefings and quotes he has given to various newspapers and the impression he conveyed to the GSRME in his private letter to them and whether he feels that he has been misquoted or misrepresented by those concerned when they have reported his views in their publications?

Suzy Chapman & Ciaran Farrell


PubMed: Papers published since January 2002 in the field of CFS by Simon Wessely including several where there is likely to be an overlap with CFS (Note: papers on GWS and fields other than CFS have been omitted from the search return of a total of 136 papers.)

Update: A number of additional papers have been published by Prof Wessely since this article was posted – see PubMed.

Roberts A, Papadopoulos AS, Wessely S, Chalder T, Cleare AJ.

Salivary cortisol output before and after cognitive behavioural therapy for chronic fatigue syndrome
Journal of Affective Disorders, 2008, Oct.

Cho HJ, Bhugra D, Wessely S.

‘Physical or psychological?’- a comparative study of causal attribution for chronic fatigue in Brazilian and British primary care patients. Acta Psychiatr Scand. 2008 Jul;118(1):34-41. Epub 2008 May 22. PMID: 18498433 [PubMed – indexed for MEDLINE]

Search field: Wessely, Simon

1: Harvey SB, Wadsworth M, Wessely S, Hotopf M.

Etiology of Chronic Fatigue Syndrome: Testing Popular Hypotheses
Psychosom Med. 2008 Mar 31; [Epub ahead of print] PMID: 18378866 [PubMed – as supplied by publisher]

2: Cho HJ, Menezes PR, Bhugra D, Wessely S.

The awareness of chronic fatigue syndrome: A comparative study in Brazil and the United Kingdom.
J Psychosom Res. 2008 Apr;64(4):351-5. PMID: 18374733 [PubMed – in process]

11: Kanaan RA, Lepine JP, Wessely SC.

The association or otherwise of the functional somatic syndromes
J Psychosom Med. 2007 Dec;69(9):855-9. Review. PMID: 18040094 [PubMed – indexed for MEDLINE]

12: Rimes KA, Goodman R, Hotopf M, Wessely S, Meltzer H, Chalder T.

Incidence, prognosis, and risk factors for fatigue and chronic fatigue syndrome in adolescents: a prospective community study.
Pediatrics. 2007 Mar;11 (3):e603-9. PMID: 17332180 [PubMed – indexed for MEDLINE]

23: Quarmby L, Rimes KA, Deale A, Wessely S, Chalder T.

Cognitive behaviour therapy for chronic fatigue syndrome: comparison of outcomes within and outside the confines of a randomised controlled trial.
Behav Res Ther. 2007 Jun;45(6):1085-94. Epub 2006 Oct 30. PMID: 17074300 [PubMed – in process]

32: Jerjes WK, Taylor NF, Peters TJ, Wessely S, Cleare AJ.

Urinary cortisol and cortisol metabolite excretion in chronic fatigue syndrome.
Psychosom Med. 2006 Jul-Aug;68(4):578-82. PMID: 16868267 [PubMed – in process]

43: Reid S, Chalder T, Cleare A, Hotopf M, Wessely S.

Chronic fatigue syndrome.
Clin Evid. 2005 Dec;(14):1366-78. Review. No abstract available. PMID: 16620458 [PubMed – indexed for MEDLINE]

44: Cho HJ, Skowera A, Cleare A, Wessely S.

Chronic fatigue syndrome: an update focusing on phenomenology and pathophysiology.
Curr Opin Psychiatry. 2006 Jan;19(1):67-73. Review. PMID: 16612182 [PubMed – indexed for MEDLINE]

52: Jerjes WK, Peters TJ, Taylor NF, Wood PJ, Wessely S, Cleare AJ.

Diurnal excretion of urinary cortisol, cortisone, and cortisol metabolites in chronic fatigue syndrome.
J Psychosom Res. 2006 Feb;60(2):145-53. PMID: 16439267 [PubMed – indexed for MEDLINE]

54: Huibers MJ, Wessely S.

The act of diagnosis: pros and cons of labelling chronic fatigue syndrome.
Psychol Med. 2006 Jul;36(7):895-900. Epub 2006 Jan 10. Review. PMID: 16403245 [PubMed – indexed for MEDLINE]

60: Cho HJ, Wessely S.

Chronic fatigue syndrome: an overview.
Rev Bras Psiquiatr. 2005 Sep;27(3):174-5. Epub 2005 Oct 4. No abstract available. PMID: 16224602 [PubMed – indexed for MEDLINE]

71: Jerjes WK, Cleare AJ, Wessely S, Wood PJ, Taylor NF.

Diurnal patterns of salivary cortisol and cortisone output in chronic fatigue syndrome.
J Affect Disord. 2005 Aug;87(2-3):299-304. PMID: 15922454 [PubMed – indexed for MEDLINE]

73: Reid S, Chalder T, Cleare A, Hotopf M, Wessely S.

Chronic fatigue syndrome.
Clin Evid. 2004 Dec;(12):1578-93. Review. No abstract available. Update in: Clin Evid. 2005 Dec;(14):1366-78. PMID: 15865734 [PubMed – indexed for MEDLINE]

74: Cho HJ, Hotopf M, Wessely S.

The placebo response in the treatment of chronic fatigue syndrome: a systematic review and meta analysis.
Psychosom Med. 2005 Mar-Apr;67(2):301-13. Review. PMID: 15784798 [PubMed – indexed for MEDLINE] MEagenda 09:42, 21 September 2007 (UTC)

91: Reid S, Chalder T, Cleare A, Hotopf M, Wessely S.

Chronic fatigue syndrome.
Clin Evid. 2003 Dec;(10):1289-303. Review. No abstract available. Update in: Clin Evid. 2004 Dec;(12):

103: Woolley J, Allen R, Wessely S.

Alcohol use in chronic fatigue syndrome.
J Psychosom Res. 2004 Feb;56(2):203-6. PMID: 15016579 [PubMed – indexed for MEDLINE]

104: Winkler AS, Blair D, Marsden JT, Peters TJ, Wessely S, Cleare AJ.

Autonomic function and serum erythropoietin levels in chronic fatigue syndrome.
J Psychosom Res. 2004 Feb;56(2):179-83. PMID: 15016575 [PubMed – indexed for MEDLINE]

106: Roberts AD, Wessely S, Chalder T, Papadopoulos A, Cleare AJ.

Salivary cortisol response to awakening in chronic fatigue syndrome.
Br J Psychiatry. 2004 Feb;184:136-41. PMID: 14754825 [PubMed – indexed for MEDLINE]

109: Lyall M, Peakman M, Wessely S.

A systematic review and critical evaluation of the immunology of chronic
fatigue syndrome.
J Psychosom Res. 2003 Aug;55(2):79-90. Review. PMID: 12932505 [PubMed – indexed for MEDLINE]

118: Fischhoff B, Wessely S.

Managing patients with inexplicable health problems.
BMJ. 2003 Mar 15;326(7389):595-7. Review. No abstract available. PMID: 12637409 [PubMed – indexed for MEDLINE]

119: Reid S, Chalder T, Cleare A, Hotopf M, Wessely S.

Chronic fatigue syndrome.
Clin Evid. 2002 Dec;(8):1075-88. Review. No abstract available. Update in: Clin
Evid. 2003 Dec;(10):1289-303. PMID: 12603930 [PubMed – indexed for MEDLINE]

122: Wessely S.

Women experienced chronic fatigue syndrome and fibromyalgia as stigmatising.
Evid Based Ment Health. 2002 Nov;5(4):127. No abstract available. PMID: 12440469 [PubMed]

125: Reid S, Chalder T, Cleare A, Hotopf M, Wessely S.

Chronic fatigue syndrome.
Clin Evid. 2002 Jun;(7):966-78. Review. No abstract available. Update in: Clin Evid. 2002 Dec (8):1075-88. PMID: 12230719 [PubMed – indexed for MEDLINE]

134: Reid S, Wessely S, Crayford T, Hotopf M.

Frequent attenders with medically unexplained symptoms: service use and costs in secondary care.
Br J Psychiatry. 2002 Mar;180:248-53. PMID: 11872517 [PubMed – indexed for MEDLINE]

136: Clark C, Buchwald D, MacIntyre A, Sharpe M, Wessely S.

Chronic fatigue syndrome: a step towards agreement.
Lancet. 2002 Jan 12;359(9301):97-8. No abstract available. Erratum in: Lancet
2002 Apr 13;359(9314):1352. Lancet 2002 May 25;359(9320):1866. PMID: 11809249 [PubMed – indexed for MEDLINE]

Another good example of Professor Wessely’s continued involvement in CFS research are the PACE Trials.

“The following information contained within “THE PACE TRIAL IDENTIFIER”:

“The trial will be run by the trial co-ordinator who will be based at Barts and the London, with the principal investigator (PI), and alongside two of the six clinical centres. He/she will liaise regularly with staff at the Clinical Trials Unit (CTU) who themselves will be primarily responsible for randomisation and database design and management (overseen by the centre statistician Dr Tony Johnson), directed by Professor Simon Wessely, in collaboration with Professor Janet Darbyshire at the MRC CTU”




Suzy Chapman

Ciaran Farrell

Re: A victory: Greg Crowhurst, via Co-Cure, 7 November 2007

Suzy Chapman & Ciaran Farrell
9 November 2007
Re: A victory: Greg Crowhurst, via Co-Cure, 7 November 2007

On Wednesday, Greg Crowhurst published a response (circulated via the Co-Cure mailing list) to the UNUM news item broadcast on BBC News at 10 on 6 November. Mr Crowhurst is a committee member and Secretary of The 25% ME Group but it is assumed that this commentary has been written in a personal capacity.

In his response, Mr Crowhurst welcomes the brief appearance of Dr Ian Gibson, MP during the BBC’s coverage of the UNUM story. Mr Crowhurst has referred to the “Gibson Inquiry” as a “Parliamentary Inquiry” and this needs correcting.

Following publication of the Gibson Report, last November, a number of organisations and individuals here in the UK, but also some US ME advocates, have erroneously attributed “official” status to this informal inquiry and the report which resulted from it. This misconception has been reiterated in the UK press, on some UK websites and by at least one US website; some editors of Wikipedia have also misunderstood the nature and status of this inquiry. We are pleased to note, however, that one UK ME organisation, Invest in ME, has now ceased using the term “Parliamentary Inquiry” in relation to the Gibson Report.

This misconception has been pointed out on numerous occasions by ourselves and by others. It is curious then, why Mr Crowhurst persists in elevating the status of this informal project of Dr Gibson’s and why Co-Cure are prepared to continue to disseminate misinformation via their international mailing list.

We should like to refute once and for all the misconception that the so called Gibson Report is an “official report” resulting from a “Parliamentary Inquiry”.

For readers unfamiliar with the background and to set Mr Crowhurst’s misattribution into context – Dr Gibson had originally stated in the media, in 2005, that he intended to call for a “full and proper” and “high level” public inquiry.

It had been understood and anticipated by the ME community that if a high level inquiry were to be secured as a result of Dr Gibson’s endeavours that the panel conducting this inquiry would need to comprise a panel of experts in various fields and should also include a legal professional. But instead of the high level inquiry the ME community had been led to anticipate, in late 2005 Dr Gibson convened the Group on Scientific Research into ME (GSRME) as a cross party parliamentary group.

He then set about assembling a committee of fellow parliamentarians (whom he recruited himself) and installed himself as chair of this panel – without having first consulted with the ME community over his failure to secure a high level inquiry within the time-frame he had imposed upon himself; nor did he first ascertain whether the ME community would consider that an informal and unofficial inquiry with no funding or dedicated resources to call on and carried out by parliamentarians, instead of the anticipated panel of experts, would be an acceptable and fit for purpose substitute for the type of inquiry that had been previously discussed with him in meetings with Prof Malcolm Hooper, Kevin Short and several Norfolk residents.

So the GSRME group was an ad hoc, unofficial committee of parliamentarians, convened by a self appointed chair and not the “Parliamentary Inquiry” that Mr Crowhurst persists in rebranding it as.

Being an unofficial inquiry, this project lacked resources, had no funding allocation to draw on and no dedicated researchers or administrative staff.

The Report, when it was finally published by the GSRME, in electronic format only, was submitted to NICE as part of the NICE CFS/ME Guideline consultation process, though not in the designated pro forma format. NICE has published no response to this particular submission.

There is no distribution list included within the document, but copies of the Report were sent by Dr Gibson to the press, to MPs, to the CMO, to the CE of the MRC and to selected ministers – complete with factual errors, ambiguities and omissions and without any form of consultation or review process having taken place, despite prior claims by Dr Gibson that some form of consultation would be undertaken prior to launching the Report and sending copies to the media.

Being an unofficial document, no government department or ministry is obliged to respond to the Report’s content or to its recommendations and so far, Dr Gibson has published no responses whatsoever from those to whom he sent copies of his Report and a covering letter, last November.

The cross party parliamentary group set up by Dr Gibson to hold this “inquiry” was not on the “Approved List” and did not enjoy the status and privileges of an All Party Group designated as being on the “Approved List”. All Party Parliamentary Groups which are on the “Approved List” have, in any case, very low status and are regarded by Parliament as unofficial.

There are dozens of cross party parliamentary groups on the Register, both on the “Approved list” and the “Not Approved list”. These interest groups are set up for issues covering everything from cheese and jazz appreciation to domestic violence and identity fraud. Dr Gibson is listed as a member of a number of these groups. The Register can be found here

Any of these interest groups are at liberty to publish their own reports – but none of them would have any status within government nor the authority of either House.

In December, 2006, Philippa Wainwright, Office of the Parliamentary Commissioner for Standards, was asked to clarify the status of the GSRME group in light of the fact that the Gibson Report had been reported in the press as having resulted out of a “Parliamentary Inquiry” undertaken by a “Parliamentary” committee.

The Office of the Parliamentary Commissioner for Standards provided me with the following written clarification on 9 January 2007:

“Scientific Research into ME group [GSRME, aka the “Gibson Group”]

“Because the group is on the Register of All-Party Groups it is entitled to use the House emblems (eg the Portcullis) on any of its documents (eg reports, press notices, agendas) and on its website, and it is also allowed to give ‘House of Commons’ as its address on its letterhead. However, groups that are not on the Approved List are not allowed to use the terms ‘All-Party’, ‘Associate’ or ‘Parliamentary’ in their title, In the light of what you say, I shall write to the group reminding them of the rules on this point.

“In parliamentary terms all-party groups have no official status, and are viewed as informal. Their reports therefore have only the authority of those who produce them.”


To summarise the status of the Report of the GSRME:

It is an unofficial document produced by an ad hoc committee of parliamentarians; it was not the product of a select committee nor the result of a commissioned inquiry; as a document, it has no status within either of the Houses of Parliament or within government.

Although presentations at “Oral Hearings” were held informally in various House of Commons committee rooms (note “committee rooms” and not the House of Commons) the document does not have the authority of Parliament or of any government department and it should not be described as a “government report” or a “Parliamentary Report” or an “official document” or an “official inquiry” or an “official report” or a “Parliamentary Inquiry”.

There are no complete records of the presentations and discussions which took place at the five “Oral Hearings”. The GSRME failed to make audio recordings of all Hearings that were held and there was, in any case, no funding for official transcripts to be prepared. Copies of some but not all Power Point presentations are posted on the official Gibson Inquiry website. No Minutes are recorded for Oral Hearing Three at which Prof Peter White, Prof Trudie Chalder and Prof Anthony Cleare gave presentations and the Minutes for some of the other “Oral Hearing” meetings are very sparse.

Initial offers of webspace were not followed up and it proved difficult for the ME community to keep abreast of developments, the dates of meetings or to establish the names of those who had been invited to present oral evidence. The decisions about who would and who would not be invited to present were controversial and contested by those who considered, for example, that it was essential that a paediatric specialist such as Dr Nigel Speight should be invited. [Although Dr Speight did present at Oral Hearing Four, his name does not appear anywhere in the Gibson Report, itself.]

Oral Hearings Two and Three took place virtually in camera as the panel had neglected to advertise the dates and locations of these two public Hearings; there is no complete list of those who presented Oral Evidence given in the Report and no appendix of Written Submissions and Written Evidence; the Inquiry’s Terms of Reference are omitted.

Much of the Report is unreferenced and reads like an opinion piece. It is therefore impossible to determine precisely what was said and discussed at the Oral Hearings, just what material and evidence the panel received by way of Written Submissions, what it had reviewed and evaluated, what it had relied upon as evidence and what it had considered anecdotal and what it had obtained or commissioned from other sources in order to inform itself in the writing up of its Report. There is no appendix of government documents and reports pertaining to ME in adults and children which the panel already had at its disposal.

Some material referred to in the Report, such as the lengthy letter the panel received from Prof Simon Wessely, has recently been determined by us as having been submitted on the basis of “a piece of personal correspondence never meant for the public”. Neither Dr Gibson nor Prof Wessely has been willing to release a copy of this material to us nor has Dr Gibson been willing to confirm whether specific statements made by the panel in the Report originated directly from this material or from the panel’s understanding or interpretation of this material and if not, to provide references or sources which would substantiate these claims. It is not possible, therefore, to assess in what ways and to what extent this material may have influenced or fed into the panel’s Report or to determine whether the GSRME panel has made a fair and reasonable assessment, evaluation or interpretation of the content of this material or the content of all other written material, submissions and evidence it had received during the course of its “inquiry”.

The inquiry, we would remind readers, was intended by Dr Gibson to be a “Public Inquiry”.

The document’s inclusion of factual errors, omissions, contradictions and ambiguities, the paucity of references, the omission of Terms of Reference, the omission of a complete list of Witnesses who presented evidence at “Oral Hearings” and the omission of a list of Written Submissions were raised by national patient organisations and patient advocates at a public meeting in February 2007 to discuss the content of the Report, its recommendations and how the document might best be used as a political campaigning tool.  Not all members of the panel attended this meeting.

But following the public meeting, the panel made no revisions or amendments to the document and these concerns remain unaddressed by the Report’s authors. This has presented the ME community with the significant problem of how best to make use of a flawed document which is essentially not fit for purpose.

Factual errors and misconceptions within the Report, for example, the section on benefits, and misconceptions about the status of the inquiry, itself, have been ingeminated by the media and reiterated on mailing lists and internet websites and are still being reiterated.

This situation illustrates very well the pitfalls of unofficial reports, resulting from informal inquiries carried out by ad hoc committees of parliamentarians under self-elected chairs, in that there are no lines of accountability when things go wrong. Although the Gibson Report has no status within Parliament or government nevertheless, its constituency of interest, that is the ME patient community, rightly wish to ensure that all statements and references made within this document have been properly sourced and can be confidently relied upon.

One editor of Wikipedia with no background in ME political issues commented that they were surprised there was no copy of the Report on the Parliament website – another mistakenly referred to the Gibson Report as being a “Reliable Source” in Wiki terminology since this was an “official document”. It has had to be pointed out that whilst a paper copy of the Report has been placed in the House of Commons Library there is no copy on the Parliament website because, as an unofficial project initiated and undertaken by Dr Gibson, the document is not published by Parliament and because the “inquiry” and the Report does not have the authority of Parliament, and since it was not commissioned by Parliament or at the behest of any government department or Minister, it is not published or distributed by Her Majesty’s Stationery Office. The status of the committee that wrote the Report and hence the status of the document, itself, should have been clarified at the beginning of the document along with the panel’s Terms of Reference – another good example of an important omission from this document.

The GSRME committee was dissolved in May 2007.

In the Minutes of that meeting, the following was recorded at minute 2 and 3:

2) Response of Group members/frequency of meeting: The Group members present discussed the fact that the other members were no longer willing to attend meetings or engage with the work of the Group. The GSRME had always been set up to run for a finite period of time to conduct an Inquiry. The other members obviously felt they have served their time and were not willing to continue. Thus the Group should disband. In any case it is confusing and of little use to have an APPG and GSRME when efforts can be concentrated in one place.

3) Mandate to speak for the Group/correspondence: Sarah Vero had made numerous attempts to get the individual Group members to agree to amendments to the report however only the members in attendance would be willing to consider amendments and as such there is not a mandate of the Group to consider amendments. Dr Gibson was still responding to correspondence on behalf of the Group and felt it was not right to continue doing so without their support.


So the GSRME panel has bequeathed upon its constituency of interest the legacy of a document for which neither factual errors, omissions and ambiguities can be addressed and as a result, many sections of the report which required attention remain unrevised, uncorrected and unreferenced. This compromises the position of the very group in whose interests this unofficial inquiry was instigated.

Brought in to comment during the BBC News at 10 report, Dr Gibson called for an “open scrutiny process in parliament” into the operation of UNUM. In the report of the GSRME in Section 6.3: How the Department for Work and Pensions Formulates CFS/ME Policy, the panel had recommended “a full investigation” into the “vested interests” of private medical insurance companies, in particular UNUM [Provident] and that the group found this to be “an area for serious concern” and recommended “a full investigation of this possibility by the appropriate standards body”.

Public and parliamentary scrutiny of the practices of private medical insurance companies, the DWP or any other commercial or public sector organisation or agency with a questionable modus operandi is of course to be welcomed. But after he had published the Gibson Report and when significant concerns about some of its content began to emerge, Dr Gibson put on record that the Report was “not out for consultation/amendment” and that ownership of the Report would remain with the panel, despite his assurances to the audience at the Invest in ME Conference 2006 that some form of consultation process with the ME community would be undertaken prior to the Report “hitting the media airwaves”.

No formal policies for the correction of errors or for the carrying out of revisions had been drawn up by the panel or discussed with the ME community before the Report was published – for Dr Gibson formed policy on the hoof.  ME advocates, advocacy groups and national ME charities, such as The 25% ME Group (of which Mr Crowhurst is Secretary), AfME and The ME Association had made representations to the panel that errors, omissions and ambiguities identified within the Report should be corrected and that specific sections needed revision – to no avail.

So the public meeting to discuss the content of the Report was a waste of time, along with the tokenistic Gibson panel/ME Association “feedback exercise”. And although  some members of the panel were apparently subsequently prepared to accept they had a duty of care to revise the document and correct the errors brought to their attention, the panel has since disbanded and the document cannot be corrected or revised.

Dr Gibson was asked, last year, to provide references for potentially damaging statements in relation to the section on ME in teenagers and children – he did not do so. As already stated above, he was more recently called upon to provide references for some very contentious, unsubstantiated claims made within the Report in Section 3.2 in connection with Prof Simon Wessely, but again, Dr Gibson has been unwilling to provide these references or cite sources for these claims.

It is ironic that Dr Gibson is calling for scrutiny and accountability from organisations such as UNUM when he has repeatedly failed to demonstrate the same commitment to transparency and accountability in his own dealings with the ME community, as evidenced by the well documented history of the process of the Gibson “inquiry” and its Report – a flawed document which many of us consider remains unfit for purpose and which we cannot comfortably and confidently place before our MPs or hand to our medical practitioners or present to the media.

Mr Crowhurst is an intelligent and politically astute man – he must surely recognise this, too. 

It has been pointed out many times on Co-Cure and elsewhere, by ourselves and by others, that the Gibson Inquiry was not a “Parliamentary Inquiry” and that the Report was not a “Parliamentary Report”. To deliberately or inadvertently elevate the status of a document known to have significant shortcomings, at best, and to contain potentially damaging content, at worst, cannot in any way be justified. 

Would Mr Crowhurst please bear this in mind next time he writes about Dr Gibson and his Report on Co-Cure? Would Co-Cure moderators please also desist from publishing misinformation? The publishing of a correction by Co-Cure would be appropriate.

Dr Gibson is passionate about calling for inquiries…within hours of having published the Gibson Report he was calling for an full investigation into WiFi. In the Minutes of the July meeting of the APPG on ME, it was recorded that Dr Turner is planning to invite the new Secretary of State for Work and Pensions to address the APPG at its February meeting. Given Dr Gibson’s recent commitment on The News at 10 to an “open scrutiny process in parliament” into the operations of UNUM and given the GSRME’s stated concerns about the way in which the DWP operates and the specific implications for claimants with ME, might we look forward to Dr Gibson actually putting in an appearance at the next two meetings of the APPG on ME? 

And if Dr Gibson does take part in next Monday’s You and Yours strand on ME will he be giving us an update on what progress he has actually made towards “a full investigation” into the “vested interests” of private medical insurance in the twelve months since the publication of his Report?

Suzy Chapman & Ciaran Farrell
9 November 2007

Links for further reading:


Agenda and Notes following the meeting of dissolution held of the Group on Scientific Research into ME (GSRME) held on 8 May 2007


Edited commentary from social scientist, Angela Kennedy, first published December 2006 following the publication of the “Gibson Report”.


17 January 2007


Realpolitik and ME by Martin J. Walker
8 November 2005

APPG on ME: Minutes of 12 July 07 meeting

Minutes, APPG on ME, 12 July 2007

Minutes of the meeting of the All Party Parliamentary Group on M.E. held at 1.30pm, Thursday 12th July 2007 Committee Room 17, House of Commons


Dr Des Turner MP (Chair)
Dr Ian Gibson MP (Secretary)
David Amess MP (Treasurer)
Celia Barlow MP
John Bercow MP

Koyes Ahmed (Office of Dr Des Turner MP)

Sir Peter Spencer, Action for M.E.
Heather Walker, Action for M.E.
Neil Riley, The ME Association
Dr Charles Shepherd, The ME Association
Tony Britton, The ME Association

Doris Jones, 25% Group
Tanya Harrison, BRAME
Christine Harrison, BRAME
Barbara Robinson, Suffolk Youth & Parent Support Group, member of EAME
Rosemary Page, Cambridge M.E. Support Group
Richard Crossich, North London ME Network
Hazel Griffiths, North London ME Network
Di Newman, Peterborough ME and CFS Support Group
Paul Davis, RIME
Joy Birdsey, RIME
Bill Kent, ReMEmber
Janice Kent, ReMEmber
Colin Barton, Sussex and Kent ME/CFS Society
Jill Piggott, Worcester ME Support Group
Dr Terry Mitchell, Great Yarmouth and Waveney PCT
Barbara Boyden, Peterborough Team Nurse
Dr Anne Gerken, Norfolk & Suffolk M.E. service
Doug Fraser (?), Hammersmith Group
Brook Hoadley, parent of teenager with M.E.
Annette Barclay, person with M.E.
Christine Russo, person with M.E.
Augustine Ryan, person with M.E.
Criona Wilson, mother of the late Sophia Mirza

1. Welcome

Dr Des Turner thanked everyone for attending and welcomed them to the meeting, particularly the main speaker – Dr Terry Mitchell, the regional NHS clinical champion for M.E./CFS in East Anglia. Continue reading “APPG on ME: Minutes of 12 July 07 meeting”