25% ME Group announces Byon Hyde MD as new Patron and Medical Advisor

The 25% ME Group has announced, today, that US Dr Byon Hyde, MD, is taking up the role of new Patron and Medical Advisor to this organisation for the severely affected.  The Countess of Mar had been a long time Patron to the 25% ME Group but was asked to stand down early this year following the NICE Guideline debacle.

WordPress Shortlink: http://wp.me/p5foE-2kj

25% ME Group  http://www.25megroup.org

PERMISSION TO REPOST

The 25% ME Group is pleased to report the appointment of their new Patron and Medical Advisor.

We are absolutely delighted to announce that Dr Byron Hyde will be taking up the role with immediate effect.

Dr Byron Hyde is leading physician and researcher specialising in Myalgic Encephalomyelitis (ME) and has worked exclusively with ME patients since 1985.

He is the founder and chairman of the Nightingale Research Foundation which is dedicated to explore, understand and treat patients disabled with ME and is at the forefront of the struggle to draw a clear distinction between ME and the current definitions of Chronic Fatigue Syndrome. In 1992 he published the medical reference book still used by researchers internationally “The Clinical and Scientific Basis of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome”.

Dr Byron Hyde is an outspoken critic of the role psychiatry has played in ME. His entreaty that “Psychiatrists should not ever be placed in charge of diagnosis and treatment of M.E. patients” is one we fully support.

Dr Byron Hyde has been instrumental in bringing about recognition of ME as a serious illness and we feel he fully represents the interests and aims of the 25% ME Group. We are proud to have him as our Patron.

We also take great pleasure in announcing our new additional Medical Advisor, Dr Nigel Speight, who, as you will read below, recently departed from AYME. We are extremely pleased to have Dr Speight on board as he is a highly respected medical professional within the ME field and a great advocate for the biomedical view of ME.

Below we have posted resignation letter from Dr Nigel Speight to AYME (Young Childrens’ ME Charity) for your information.

Dear all

I just thought I should inform you officially that after a long and happy association with AYME I have decided to resign as their Patron. Without going into too much detail I would say that over the last couple of years I have become aware that they have changed their position on several areas and that our views have accordingly diverged.

In particular AYME seem to have become more willing to collaborate with the medical and psychiatric establishment in order to appear respectable. This appears to have been the cause of AYME’s relative enthusiasm for the NICE Guidelines, which most of us feel involve an overemphasis on CBT and GET. This compromise seems to have helped the psychiatrists to get a new lease of life.

The result of all this is that AYME appear to have alienated themselves from most of the other ME charities (with the exception of AfME who appear to be taking a similar position). In this controversy I feel more in sympathy with the rest of you.

I have gained the impression that AYME no longer appreciate my opinions and prefer my status as their figurehead to be a largely silent one.

It is a combination of all these factors that has caused me to resign and I am sure you will all understand.

With Best Wishes

Nigel Speight

We are especially delighted to announce the new Patron and Medical Advisor for our Group because as many of you will know, both stand for the true recognition and research of ME (as opposed to including it along with other Chronic Fatigue conditions). They also are firmly opposed to any psychological intervention within the area of ME.

We hope you will be delighted along with us regarding this news and please feel free to report or republish this information within your own publications etc.

With best wishes

Simon Lawrence

Chairperson

25% ME GROUP

21 Church Street
Troon
Ayrshire
KA10 6SQ

enquiry@25megroup.org

www.25megroup.org

Dr Nigel Speight resigns from children and young person’s organisation AYME

Dr Nigel Speight resigns from the children and young person’s organisation AYME

For many years, paediatric specialist, Dr Nigel Speight, has been a champion of families with a child or young person with ME or where ME is suspected. 

He has advocated for families facing wrongful accusation of MSpB (FII), where child protection orders have been instigated or threatened following disagreements between the family and the child’s medical professionals over the management of the condition, where medical professionals have been unwilling to make a diagnosis of ME and where social services have become involved in the case when a child or young person has been unable to regularly attend mainstream school due to ill health.

Dr Speight recently announced his resignation as a Patron to the children and young person’s patient organisation, AYME [Association of Young People with ME]  http://www.ayme.org.uk/.

AYME’s Medical Advisor is Dr Esther Crawley, Consultant Paediatrician at the Royal National Hospital for Rheumatic Diseases NHS Foundation Trust. Dr Crawley had been a member of the NICE CFS/ME Guideline Development Group. 

Dr Speight, who is now retired from the NHS, has become a Medical Advisor to the 25% M.E. Group.

The following announcement was published in a recent 25% M.E. Group newsletter:

I just thought I should inform you officially that after a long and happy association with AYME I have decided to resign as their Patron. Without going into too much detail I would say that over the last couple of years I have become aware that they have changed their position on several areas and that our views have accordingly diverged. In particular AYME seem to have become more willing to collaborate with the medical and psychiatric establishment in order to appear respectable. This appears to have been the cause of AYME’s relative enthusiasm for the NICE Guidelines, which most of us feel involve an overemphasis on CBT and GET. This compromise seems to have helped the psychiatrists to get a new lease of life.

The result of all this is that AYME appear to have alienated themselves from most of the other ME charities (with the exception of AfME [Action for M.E.] who appear to be taking a similar position). In this controversy I feel more in sympathy with the rest of you. I have gained the impression that AYME no longer appreciate my opinions and prefer my status as their figurehead to be a largely silent one. It is a combination of all these factors that has caused me to resign and I am sure you will all understand.

With Best Wishes

Nigel Speight

RSM “Medicine and me” event: Commentary by John Sayer

Royal Society of Medicine “Medicine and me” event on ME and CFS held Saturday, 18 July 2009

Commentary

John Sayer (Chair, M.E. Support-Norfolk)

25 July 2009

The half-day conference was organised jointly by the Royal Society of Medicine, the MEA, AfME, AYME, the 25% ME Group and TYMES Trust.

The promotional literature informed us that:

“‘Medicine and me’ conferences, initiated and developed by the Royal Society of Medicine, are specifically designed for patients. These meetings bring together patients, their families, carers, advocates, patient support groups, clinicians and researchers to discuss care and research issues in a particular condition…[and]…aim to provide a forum in which patients’ concerns about their illness are given top priority.”

Unfortunately, the pattern of the day – two presentations at a time followed by a five-minute slot for questions – did not really provide for much in the way of patient-led questions and/or discussion. It was, however, an opportunity to see what the various bodies involved had to say for themselves (and encouraging to hear Jane Colby of TYMES Trust underline in her welcome address that the title of the proceedings was “Medicine and me: ME *and* CFS”).

(This write-up is based on notes taken at the time by myself and Gus Ryan.)

Session 1 was chaired by Dr Charles Shepherd (MEA), who reminded us that there had been two parliamentary meetings [i.e. the All-Party Parliamentary Group on ME and the Countess of Mar's ForwardME Group] earlier in the week and that people still had a chance to submit written evidence to the APPGME’s NHS service provision inquiry.

Dr Abhijit Chaudhuri (of the Essex Centre for Neurosciences) spoke on “A rational, efficient and practical approach to diagnosis”. He said that ‘CFS’ represents a wide group of patients and the term does not help matters; that there should be earlier diagnosis, perhaps three months into illness onset (six weeks where children are concerned). He does not think the NICE Guideline has helped. In his view, post-exertional malaise, muscle cramps and *well preserved motivation and interest* (my emphasis) are key symptoms of M.E. and referral should be to a neurologist, since even psychiatrists admit that roughly 10% of ‘CFS’ sufferers have a neurological problem. He said that we need a national centre and funding for it (Romford being a treatment – not research – centre). His talk ended with a slide presentation of inflammation of the dorsal root ganglion, which he pointed out was “the gatekeeper of sensations”.

In the question slot Ciaran Farrell asked how we could change the NHS – to much applause from the audience. Dr Chaudhuri repeated that we need a national research centre.

“M.E. in children and adolescents” was presented by Shannen Dabson, a teenager whose story struck a particular chord with me as a teacher (prior to M.E.). She has had M.E. for six years, and now has very little trust in adults, having received virtually no respect for herself and her diagnosis. She found herself “written off” by her school, who didn’t send her work, didn’t mark the work she managed to do, didn’t send her the school newsletters or keep her informed of such things as the school photographs (which was the part that had me closest to tears, as I’d suffered the same treatment from my last employer: I will never forgive them for my absence from the school photograph of my form pupils; for both Shannen and me, it was like being airbrushed out of history). Shannen had had to make her own arrangements for taking exams, as her school refused to enter her on the grounds of a poor attendance record. To her admirable credit, she got six GCSEs anyway! I’m hoping to reproduce her talk for “MES-N” members, as it should be inspirational, especially for youngsters. She came up with what I personally consider to be a very practical, appropriate and *scientifically sound* slogan: “Work smarter, not harder!”

Hardip Begol (of the Department for Children, Schools and Families) spoke on “Addressing the educational impact of ME”, and said that Shannen’s situation is all too common from an educational point of view and that it was difficult to make teachers believe in ME/CFS. No personal disrespect to Mr Begol, but it struck me that what he had to say in his presentation did not have all that much immediate relevance, being, as one might expect, current government ‘fudge’. His comments were not actually specific to M.E., but here’s hoping that the conference gave him something to think about and take back to the DfCSF (though I’m not really holding my breath on that one).

In the question slot following these two talks Mary-Jane Willows (of AYME) said that the balance of power was with schools and Jane Colby pointed out that parents are too afraid to complain. (Personal note – no wonder, with the spectre of Social Services waiting in the wings, ready to pounce.)

Catriona Courtier (of the West London M.E. Self Help Group) spoke on “Treatment: the patient’s perspective”. She has had M.E. for twenty six years and her daughter is also ill. She reminded us that an AfME survey revealed that patients received very little proper treatment and that an MEA survey demonstrated that graded exercise therapy (GET) was the most dangerous form. She is ‘anti-NICE’. She said that staff at her local clinic *want* to help – but are misinformed.

Prof Anthony Pinching of the Peninsula Medical School, Plymouth, spoke on “Treatment – evidence-based and pragmatic approaches” and thinks that things are changing for the better. In his view, M.E. is a physical illness with psychological consequences and that people should work together and “not lob bricks at each other”. He said that the Cornwall service does make home visits. He advocates a ’symptom-control’ approach: which symptoms does a patient want most help with? I found him to be a bit vague and general, really, and he seemed to be saying that every individual needs different treatment (including psychological approaches), to be negotiated between patient and physician, and seemed to imply that success depended on the doctor-client relationship (which I personally find a bit too New-Agey: “permission to be ill and permission to have fun whilst you’re ill”). He did, however, say that there is a need for “building M.E. into the medical curriculum” (note – although it depends on exactly *what* is built in!). In response to a question about CBT from Dr Charles Shepherd, he indicated that such treatment should be ‘individualised’.

In the question slot Dr Chaudhuri expressed disagreement with Prof Pinching, saying that patients are *not* listened to and that the NICE Guideline is aimed at a *broad* group – these points being applauded by the audience. Prof Pinching responded that the NICE Guideline is not perfect, but should be used “to best effect”.

After a short (very short!) break, Sir Peter Spencer (Chief Executive Officer, AfME) chaired Session 2.

Dr Neil Abbott (ME Research UK) spoke on “Research: what do patients want and why isn’t it happening?” He suggested that the RSM host a biomedical conference on M.E. (Applause!) He said that the psychosocial model is predominant in the UK, although not quite so much in the US. He quoted Prof Simon Wessely with reference to psychosocial interventions: “certainly, those interventions are not the answer to CFS”. MERUK survey reveals that research on mitochondria, RBCs, immune cells, muscles, blood vessels, genes and brain are wanted; that this is not  “sexy” illness. ‘ME/CFS’ label is a problem: it is a process of elimination and that leads to a dustbin diagnosis. He is critical of the psychosocial approach, which is applicable to *all* illnesses (used to manage symptoms) and not specific to M.E. The real problem, in his view, is lack of funding.

Prof Stephen Holgate (University of Southampton) spoke on “ME: a research orphan for too long”. He said we need research because too little is known [sic] and said that the history of M.E. has dictated a mental health approach, it being perceived as having evolved from neurasthenia ['nervous debility']. He said, “It’s a system disorder” and that ‘omics’ should be used – i.e. genomics, proteomics and metabolomics. He referred to ‘ME/CFS’ as a “condition or conditions (25 or more)”; that the government won’t allow integrated research. He is putting together a workshop in November (the Medical Research Council Interdisciplinary Expert Group on M.E.), a systematic review deciding priorities, saying that a collaborative needs to be formed from charities [sic], the MRC and researchers, and that there is a need to ‘join up’ patients from clinics/centres. [Personal note: it all seemed to me a bit like reinventing the wheel and I have my misgivings about not only which 'charities' will be invited to participate but also the calibre of patients from the clinics/services.]

Dr David Misselbrook (Dean of the RSM) then invited questions to the panel of speakers. An elderly neuroscientist and his grandson tried to deliver a plug for the Lightning Process, the grandson claiming we had “wasted all this time talking when a cure has already been found” [sic], but Dan [from "M.E. Support-Norfolk"] pointed out that we hadn’t come all this way to hear a sales pitch for LP and Jane Colby expressed serious misgivings about success claims, citing an example of further harm caused to a patient; she also pointed out that no one can legally claim recompense if LP doesn’t cure a patient as it is not offered as a treatment, but a ‘training’.

Ciaran Farrell challenged Prof Holgate’s ‘history’ of M.E. but Prof Holgate said he had been misunderstood, that it wasn’t his own belief that M.E. was a form of neurasthenia and that he agreed with Ciaran, adding that he wanted to get rid of the terms “CFS” and “M.E.” [whatever that implies!].

In “Closing remarks”, Mary-Jane Willows said that there should be quick diagnosis, raising of awareness and no “one size-fits-all” approach. Doris Jones (of the 25% ME Group) read out a list of M.E. sufferers who have died and requested a minute’s silence in their memory, which was dutifully observed.

All in all, in my own opinion? A worthwhile day in order to find out what is going on in various quarters, but throughout the proceedings I did wonder who the ‘target audience’ was supposed to be, and for whose benefit this had all been arranged. Was it a ‘box-ticking’, ‘patient consultation’ exercise? The subtitle of the event, “Hearing the patient voice”, was a bit misleading, since we were mostly being talked at, not listened to; there certainly wasn’t enough time, as I said at the beginning, for much questioning or discussion. But maybe some of what was said will pay dividends. Fingers crossed.

John Sayer, Chair
M.E. Support-Norfolk

————————-

Ed Notes:

1] Terms of Reference for the MRC’s Interdisciplinary Expert Group on M.E. have yet to be agreed (FOI Act).

2] ME agenda is unable to enter into correspondence around the Lightning Process.

Invest in ME: Statement regarding Forward-ME

The Minutes of the last meeting of the Forward-ME group (a caucus group to the APPG on ME, convened and chaired by the Countess of Mar) held on Wednesday 8 July, at the House of Lords, can be read here on ME agenda or here on the website of Forward-ME.

Invest in ME, who are members of this group, have issued a statement in connection with Forward-ME and the last meeting of the group:

Invest in ME

[Forward-ME] Meeting 8th July 2009

IiME were not able to attend the meeting of this group on 8th July 2009 in London. As for every other meeting we submitted our comments to the Countess of Mar and all other members of this group in advance.

1 Attendance at Meetings and Visibility of Comments

We would like to return to our previous email (submitted in an email on 12th December 2008) where we stated the following -

We understand that, as we were unable to attend the last meeting, any decisions made at the meeting would not include our vote.

However, we see no reference in the minutes of either of the meetings to show that our views, as submitted in documentary form prior to each of the meetings, have been discussed or included in the discussions.

We would like to see that our comments have been entered into the discussions. Will the minutes reflect this?

We never received any response from our email of 23rd March.

2 GOSH medical meeting on ME/CFS in September to be discussed and the subject of Lightning Process

In the next meeting the subject of the GOSH at a day long medical meeting on ME/CFS in September is to be discussed and the subject of Lightning Process.

Mary-Jane from AYME has written “I share your concerns about this (LP) being included in the meeting”

We find this strange and hypocritical.

AYME have advertised LP for its members and freely allow discussion without seemingly making any critical comment on the lack of a research base, the numerous cases where people have been made worse and the fact that the practitioners of LP are generally not registered healthcare practitioners and take no responsibility for the results.

To state that there are concerns seems to us to be hypocrisy.

One should also remember that AYME and AfME are not in a position to criticise GOSH for including behavioural therapies/businesses as most of their recent joint conference in Milton Keynes included known advocates of the behavioural causality for ME and also included an insurance company representative.

3 Questions for Esther Crawley CNRCC Children’s Services

We have the following questions for Esther Crawley.

In your CV it states that you published research showing “children with CFS/ME don’t go to school because they are unwell not anxious”. However, isn’t it true that you believe there is a condition termed Pervasive Refusal Syndrome (PRS)?

If the answer to i) is yes then what proof do you have of this, what research is there to prove this really exists?

If the answer to i) is yes then how many children who were diagnosed with ME have you believed to have PRS?

What medical tests do you perform on patients who are suspected of having ME/have ME?

Do you test for acute and/or reactivated infections?

From the minutes of the meeting it appears none of our points were discussed. IiME were informed by CoM [Countess of Mar] that the questions to Esther Crawley were not asked as they were not appropriate to the discussion. The minutes of that meeting are available here

Ends

——————-

Please note that ME agenda is unable to enter into correspondence around the Lightning Process.  Please direct any enquiries regarding the content of the Minutes of Forward-ME meetings to the Chair of Forward-ME.  Please direct any enquiries regarding the content of Invest in ME’s statement to Invest in ME.

GOSH gives platform to Lightning Process

(Correction: An earlier version of this post erroneously associated Ms Anna Gregorowski with the PRIME Project – apologies to Ms Gregorowski for this misattribution. )

GOSH gives platform to Lightning Process

Please note that ME agenda is unable to enter into correspondence around the Lightning Process.

In the previous posting Forward-ME: Minutes of meeting 8 July 2009 Dr Charles Shepherd (ME Association) is reported as having raised concerns in relation to a forthcoming event at University College London in conjunction with Great Ormand Street Hospital (GOSH) at which Phil Parker of the Lightning Process is scheduled to give a presentation.  Also presenting is Prof Peter White (BARTs, co-PI for the PACE Trial). 

See:  Forward-ME: Minutes of meeting 8 July 2009  Minute item 5. Lightning Process

The event to which this item refers is:

University College London in conjunction with Great Ormond Street Hospital

http://www.ich.ucl.ac.uk/education/short_courses/courses/2S-88

From Assessment to Recovery: Holistic Approaches to Working with Young People with CFS/ME

This annual one day event will provide you with skills and knowledge on how to manage Chronic Fatigue Syndrome (CFSME) when working with children and young people.

The holistic theme is throughout the day from diagnosis to treatment. You will learn about motivational interviewing and have an introduction to the Lightning Process. You will hear from young people accessing support at GOSH and be able to ask them questions.

There will be two interactive workshops: Dietary management and Interdisciplinary skills for treatment. There will be a mini-lecture focussed on Medical management.

Date: 30 September 2009

Why you should attend

The day will provide

- Interdisciplinary assessment and treatment ideas

- opportunity for networking

- interactive workshops

- informative presentations

Who should attend?

Clinicians and health professionals who work with young people and /or have a special interest in CFSME

Programme

Please note that this is a draft programme and is likely to change before the event. Please continue to check the website for updates.

08.45 – 09.15 REGISTRATION & REFRESHMENTS

09.15 – 09.45 Keynote address Ms Anna Gregorowski

09.45 – 10.30 The importance of diagnosis & the power of labeling for patients with chronic, unexplained, disabling fatigue Professor Peter White

10.30 – 11.15 Helping kids get ready, willing & able to make changes: motivational interviewing in chronic illness Dr Deborah Christie

11.15 – 11.30 REFRESHMENTS

11.30 – 12.30 Video diaries Patient/parents

12.30 – 13.00 Outpatient Rehabilitation Programme at GOSH Dr Anna Hutchinson & Monica Samuel

13.00 – 13.45 LUNCH

13.45 – 14.00 Networking options

14.00 – 15.15 Workshops/Mini lectures (each delegate selects 1 workshop/mini lecture to attend)

1. Dietary management of CFS/ME Judith Harding

2. Clinical investigation…to test or not to test Dr Vic Larcher, Dr Jo Begent & Dr Terry Segal

3. Basic skills of treatment & management of CFSME, including relapse prevention Dr Anna Hutchinson & Monica Samuel

15.15 – 15.30 REFRESHMENTS

15.30 – 16.15 Introduction to Lightning Process Phil Parker

16.15 CLOSE

DISCLAIMER

The GOSH Chronic Fatigue Syndrome/ME (CFSME) service is committed to sharing expertise & knowledge related to CFSME & young people. We do not endorse or recommend treatment & management other then that recommended by NICE (www.nice.org.uk) & RCPCH guidelines (www.rcpch.ac.uk).

Speakers

Course Directors:

Dr Anna Hutchinson, Senior Clinical Psychologist

Monica Samuel, Senior Physiotherapist

——————–

Please refer to UCL site for meeting registration details

Forward-ME: Minutes of meeting 8 July 2009

Would Dr Esther Crawley like to provide evidence to support this statement?

“Dr Crawley explained that the reputation the CFS/ME charities had for infighting was not particularly helpful and prevented research and clinical involvement.”

In February, this year, Dr Crawley, who had been a member of the NICE Guideline Development Group, was awarded £730,000 for research into “CFS/ME” and “Fatigue” in children:

http://www.bristol.ac.uk/ccah/news/2008/12.htmldresthercrawley

 

The Minutes of the last meeting of the Forward-ME group, held on Wednesday 8 July at the House of Lords, have now been posted on the group’s website:

This is a caucus group to the APPG on ME convened by the Countess of Mar, last October. Membership of the group is by invitation only; members of the public are not permitted to attend either as participants or observers.

The 25% ME Group had been a member of Forward-ME but has since withdrawn all involvement with the group. 

—————————-

http://www.forward-me.org.uk/8th%20July%202009.htm

FORWARD-ME

Minutes of the meeting held on Wednesday 8 July 2009 at the House of Lords

1. Present: Christine Harrison – BRAME

Bill and Janice Kent – ReMEmber

Jane Colby – TYMES Trust

Peter Spencer – AfME

Charles Shepherd – MEA

Mary-Jane Willows – AYME

Margaret Mar – Chairman

 

2. Apologies: Tanya Harrison – BRAME

Sue Waddle – MERUK

Kathleen McCall – Invest in ME

 

3. Minutes of the Meeting held on 21 April 2009:

The minutes of the meeting were agreed and signed by the Chairman.

4. Dr Esther Crawley, FRCPCH; PhD, Senior Lecturer at the University of  Bristol and a Consultant Paediatrician, Chair of the CFS/ME Clinical  Research Network Collaborative (CCRNC)

and

Dr Hazel O’Dowd, MSc, D Clin Psych, Consultant Clinical Psychologist, Clinical Champion for CFS/ME services for Avon, Gloucester, Wiltshire and Somerset:

The Chairman introduced Dr Crawley and Dr O’Dowd and thanked them for coming to address the Group.

Dr Crawley gave a PowerPoint presentation a copy of which she kindly agreed to send to us after the meeting (see Presentations )

http://www.forward-me.org.uk/Presentations.htm 

Click the link to open/save the file depending on your browser

CFS/ME Clinical and Research Network and Collaboration by Esther Crawley – PowerPoint Show file

http://www.forward-me.org.uk/Presentations/forwardME_no_photos.pps  (Ed: MS PowerPoint or compatible reader required)

She explained that there were historical issues that had resulted in mistakes being made over patient participation. She had fought for patient/carer involvement and, by the time of the next CCRNC executive there will be 8 patient/carer representatives (4 from charities) on the Executive committee.

The National Outcomes Dataset (NOD) is an essential tool for providing evidence for further research into causation and treatments.

There are many strengths upon which the CCRNC intends to build. Openness and their recognition of the importance of working together has already attracted MRC, NIHR and Welcome support. The list of current research studies currently being carried out by members of the CCRNC was extensive and covered many medical specialisms.

Provision of services was a serious weakness, especially where children were concerned. Most children did not even get a diagnosis; there was no domiciliary provision for them as, indeed, there was not for most adults who are seriously affected. There was, historically, a lack of patient involvement.

Opportunities for progress were opening up with the ability to do large-scale research on cohorts of 3,000 patients. There was no other comparable large scale cohort in the world.

An open approach which looked at both good and bad results was essential if improvements in care, data collection and sharing, and the ability to apply political pressure were to be achieved.

Dr Crawley explained that the reputation the CFS/ME charities had for infighting was not particularly helpful and prevented research and clinical involvement.

The meeting was opened to questions. Janice Kent asked whether the Genome Wide Association Studies were linked to the genetic research conducted by DR Jonathan Kerr. Dr Crawley explained that his work involved gene expression – how the genes function. This generated hypotheses for further investigations. The results could be altered by effects secondary to the illness – by alcohol, drugs or exercise, for example. Genome-wide association studies involved scanning the DNA of a large cohort of patients to find common genetic variations associated with illnesses which would enable researchers to detect, treat and prevent diseases.

Charles Shepherd asked whether, in the light of the widespread opposition to the NICE Guidelines, charities that were opposed to them would be invited to become members or associates of the CCRNC executive. Dr Crawley acknowledged that, whilst the NICE Guidelines were flawed, they were a start. There was a need for all to work together to produce evidence to effect a change in the guidelines. In order to join the collaborative, charities would be expected to sign up to the evidence based approach. It would be a matter for discussion.

Janice Kent asked about charities and groups that had been excluded from formal representations to the specialist clinics when they were being set up. She explained that they had a wealth of information and experience. Dr Crawley said that the CCRNC want to work with everyone concerned and ask Janice to write to her with the detail.

Christine Harrison asked about coverage by the CCRNC. She explained that the east of England had no specialist services at all. Dr Crawley agreed that provision for most areas was thin. The original budget had been for about £100,000 for each clinical team. To be assessed as cost effective, this would treat 100 patients. Some regions were dealing with 300 patients on this budget. There was a very real need for effective local services.

Christine asked about the grading of patient evidence as NICE had given the very large amount of evidence it received the lowest grading. Dr Crawley acknowledged that the method for grading was imperfect. Patient experience was valuable and should inform high quality research, opening the door to further research.

Jane Colby asked about the rationale of treatments offered for different aetiologies of CFS/ME. Dr Crawley explained that with an illness like CFS/ME which is a heterogeneous disorder there were differences between what was observed clinically and what was shown biologically. She cited schizophrenia and bipolar disorder, which were thought to be separate illnesses but are the same on genome wide association studies. There was a need for caution as not enough was known. In her clinics, patients were offered a variety of options which were individualised. If they made a wrong choice another option would be sought. There is currently no evidence of what will work for different subgroups. Jane asked about return to school. Dr Crawley said that she listened to her patients and helped them to achieve what they thought they could do, whether it was to improve their athletic performance, socialising or education, for example.

Peter Spencer commented on several of the points raised including analysis of data, measurements of effectiveness, benchmarking and people wanting to work with and learn from each other. There was a need to concentrate research resources. Greater patient involvement was key. There was no obligation on PCT’s to take the severely affected into account. The severely affected were particularly neglected; they had no voice and it was not surprising that they were particularly frustrated.

Charles Shepherd commented on the fact that those with the greatest need were given the lowest priority. Dr Crawley suggested a solution would be for them to use the NICE Guidelines which state that the severely affected have the right to have an immediate domiciliary visit and access to all services. If there were no specialists in their area they should ask for an out of area referral. These were costly and, if used enough, local services would be provided on cost grounds. It was not good practice to expect severely affected children and adults to travel long distances for consultations or for physicians to travel to make domiciliary visits. The situation was gradually improving, but effective outcomes were still a drop in the ocean compared with the unfulfilled need.

Dr O’Dowd spoke about training, for which she is responsible within the CCRNC. She accepted that it was not perfect. In 2003 she had to establish training for the first wave of teams with national training for the new clinicians. The DoH mandate was to improve diagnosis by GP’s. This was improving very slowly. Initially, when they set up training courses, only a few interested GP’s attended. It was difficult to attract those who were sceptical about CFS/ME. They then attached training to the end of other events that were more attractive to GPs. There were also local GP training schemes happening in a piecemeal way. They wanted to get CFS/ME on the core curriculum for medical, physiotherapy and occupational therapy training. This was difficult, but there were some successes. She acknowledged that there were regional variations. In some places there was a high staff turnover for specialist services. They were developing the workshops. Additionally, over the next 2 years they hoped to develop an on-line training package that would be easily accessible. Working with the CCRNC had been beneficial as the trainers could have access to a large body of training material from the regions which cut down their workload.

Speaking personally, she said that there was much less scepticism about CFS/ME amongst the people she worked with. She had seen a marked change in her day to day dealings with doctors and other health care professionals. She felt that it was essential that the GP, district nurse and other members of the primary care team should always be involved in home visits. The most successful encounters were those that occurred on a one-to-one basis.

Margaret Mar asked how Dr O’Dowd would address the charge of a lack of balance between the psychological and the biomedical models of the illness at the April meeting of the CCRNC. She said that, after her experience of working with patients with other chronic conditions such as cancer and arthritis, she had been surprised to find that this was an issue with CFS/ME. She had not had any personal problems with it – in fact she found that sufferers have broader minds that many with other illnesses, possibly because they had been so neglected and forced to fend for themselves. The April conference had been full of variety, with lots of biology, but she accepted that they did not get it right. There was a problem in that many invited speakers, whose contributions were valuable, would not attend or would not agree to their papers being made public because they were wary of criticism.

Charles Shepherd asked whether the CCRNC had a view about causation, particularly the roll of deconditioning and abnormal illness behaviour. Dr O’Dowd said there was no overall view as there was no defined causation and the processes were not yet understood. This should not stop people being helpful. Patients understood well what affected them and any fitness programmes were developed jointly with the patient. Very few could be described as deconditioned.

Mary-Jane Willows commented that there was ‘no one voice’. If everyone did the same there would be no learning. Models of service were one of the factors in terms of outcomes.

Janice Kent asked about adverse effects from participation in the PACE trial. She described what had happened to a particular patient from her group, she was advised to obtain the patient’s permission and to feed back to the PACE triallists. It was essential that they were aware of bad results as well as good ones. Dr Crawley pointed out that all treatments have some side effects and that it was important to find those that worked for individual patients.

Christine Harrison asked whether CCRNC had a website. She commented on the lack of any services in East Anglia and asked whether they used patients in their training sessions. She also asked whether CFS/ME should be included in neurology training. There was no dedicated CCRNC website. As CFS/ME was bigger than just neurology, it was not thought appropriate to confine it to ‘one box’. The lack of GP services meant no home visits. As a result, there was an unknown number of patients who had fallen off the radar of NHS care. Unfortunately, there were not enough resources to cover every contingency and it was impossible to train GPs who do not want to listen.

Peter Spencer echoed the need for training and commented on the variations in awareness of CFS/ME. *He understood that Dr Miller of Liverpool University had developed a training module on CFS/ME for the Royal College of physicians. The workshops at the April conference had involved professional workshops and good interaction. Assumptions about the agenda for the conference were, unfortunately, based on assumptions about where speakers came from rather than facts based on what they actually said. AfME was associated with PACE and had been pleased by the very low drop-out rates. He agreed that adverse effects should be reported. There was a need to reconcile evidence of NHS providers with patient surveys on outcomes and to question the differences. In so far as GET was concerned, there was a need to look at the detailed evidence with clinicians. For example, he asked whether it was proper GET. Were randomised control trials appropriate for long-term, chronic conditions such as CFS/ME? He agreed that evidence based principles were essential.

Charles Shepherd asked whether there were exclusion criteria as he had a case where a patient had been excluded on grounds of obesity. Dr Crawley said there was no central policy. She screened her patients because there were other causes of fatigue and she had found one child with undiagnosed leukaemia. She could not judge decisions made by other clinicians.

5. **Lightning Process:

Charles Shepherd had been made aware of a meeting which was to take place at University College London in conjunction with Great Ormond Street Hospital which appeared to promote the Lightning Process for patients with CFS/ME. As Dr Crawley knew something about the subject, she was asked to remain and to contribute to the discussion. Of particular concern was the promotion of the programme to vulnerable clinicians who had just started to practice. After some discussion about the pros and cons of the programme, it was agreed that Mary-Jane Willows would talk to the organisers on behalf of Forward-ME highlighting our concerns.

6. APPG Inquiry:

As this had been discussed at the APPG meeting that took place immediately before the Forward-ME meeting, it was agreed that there was not much more to be said, though there were concerns about delays and the incomplete coverage of prospective witnesses with questionnaires.

7. MRC Project:

***Charles Shepherd reported that the latest information was in the MEA magazine and on their website.

8. Any Other Business:

Margaret Mar reported that she had had an interesting meeting with Dr Wendy Ewart, Director of Strategy for the MRC. She was interested to work with us and to meet the CCRNC team.

Following a letter from InvestinME [sic] in which the difficulties of working with charities and groups who were not of the same mind on particular matters, Margaret Mar had written to them asking whether they wished to continue with their membership of Forward-ME. This would be discussed further at the next meeting.

There being no further business, Margaret Mar thanked Dr Crawley and Dr O’Dowd for their very full presentations and for their candid responses to our questions. She hoped that they would both agree to continue to work with Forward-ME.

9 Date of Next Meeting:

To be advised.

——————-

*Dr Alistair Miller was a presenter at the Royal Society of Medicine “Chronic Fatigue Syndrome” Conference on 28 April 2008:

Download Abstracts and Biographies [PDF 86k]
http://www.rsm.ac.uk/chronicfatigue08/abs.pdf

What drugs can I use? [PDF 243k]
Dr Alastair Miller, Royal Liverpool University Hospital
http://www.rsm.ac.uk/chronicfatigue08/moss_miller.pdf

What drugs can I use? Dr Alastair Miller
http://rsm.mediaondemand.net/player.aspx?EventID=1337

**Please note that ME agenda is unable to enter into correspondence around the Lightning Process.  Please direct any enquiries regarding the content of these Minutes to the Chair of Forward-ME.

***Refers to the MRC CFS/ME multi-disciplinary panel chaired by Prof Stephen Holgate.  Although the group has held several meetings, the group’s Terms of Reference have yet to be agreed and published (FOI Act).

APPG on ME meeting: 8 July 2009 and Inquiry into NHS services 1st Oral Evidence session: 9 July 2009

Update: 12 July:

The Inquiry questionnaire for Service Providers is now available from the APPG on ME website here:

http://www.appgme.org.uk/NewQuestionnaire/Questionnaire.html

QUESTIONNAIRE on Service Provision

Below is the questionnaire on service provision sent to PCTs in England and Wales

http://appgme.org.uk/Downloads/PCT_ME_Survey_Final.pdf

or open PDF here on ME agenda:  PCT ME Survey Final

—————————-

1] APPG on ME meeting: 8 July 2009

2] APPG on ME Inquiry into NHS services for people with ME: 1st Oral Evidence session: 9 July 2009

 

1] A meeting of the All Party Parliamentary Group on ME (APPG on ME) took place on Wednesday, 8 July 2009 in House of Commons Committee Room 13.

The meeting, which also served as the Group’s AGM, was attended by MPs Dr Des Turner, Andrew Stunell, Peter Luff and Edward Davey, representatives of national patient organisations, including Action for M.E., The ME Association, The Young ME Sufferers Trust, BRAME, RiME, ReMEmber (The Chronic Fatigue Society) and several members of the ME community.

AGM: Re-elected Office Holders:

Dr Des Turner was re-elected Chair.

Vice Chairs Andrew Stunell and Tony Wright and Treasurer, David Amess, remain Office Holders.

Dr Ian Gibson who had served as Secretary to the APPG on ME committee stood down following his resignation from Parliament in June.

The Countess of Mar* was elected Secretary to the APPG on ME.

Dr Turner warned that a new Chair would be needed as he does not intend to stand again in the next General Election.

Action for M.E. and the ME Association will continue to provide administrative support to the APPG by providing the Secretariat.

Summaries of the meeting, a transcript and minutes will be posted here as they become available. The next meeting of the APPG on ME will take place in the Autumn.

The APPG on ME maintains a website at: http://www.appgme.org.uk

*In October, last year, the Countess of Mar convened and chairs a caucus group – Forward ME. The members of the Forward ME caucus group are: Action for M.E., The ME Association, AYME, The Young ME Sufferers Trust, BRAME, Invest in ME, ME Research UK and ReMEmber (The Chronic Fatigue Society).  The 25% ME Group was a member of Forward ME but has since withdrawn from the group.

A website for Forward ME is maintained at: http://www.forward-me.org.uk  where agendas and minutes of meetings can be accessed.

 —————————-

2] APPG on ME Inquiry into NHS services for people with ME: 1st Oral Evidence session: Thursday, 9 July 2009

It is unconfirmed which national patient organisations have submitted Written Evidence and whether and when these submissions will be released.

Following the first Oral Evidence session, the ME Association published its 3000 word submission.

The full submission can be read on the ME Association’s website.  As this is a long document I am publishing only the Executive Summary, below:

For the full Written Submission go to:  http://www.meassociation.org.uk/content/view/911/161

ME Association submission to the APPG Inquiry into NHS Services for people with ME

The All Party Parliamentary Group on ME Inquiry into NHS services for people with ME/CFS is now calling witnesses to give evidence before it. Dr Charles Shepherd, our medical adviser, answered questions this afternoon (Thursday July 9). Our written submission appears below.

EXECUTIVE SUMMARY

1 ME/CFS covers a wide spectrum of clinical presentations and severity. This has to be appreciated when planning NHS service development and the training of those involved – doctors, nurses, occupational therapists, physiotherapists – in the clinical assessment and care of patients.

2 Everyone with ME should be able to receive an early and accurate diagnosis, normally through the primary care system, along with access to a local hospital based specialist service for further advice on either diagnosis or management, where necessary.

3 The severely affected group require home based management and designated in-patient beds for assessment and management.

4 The MEA submission describes serious deficiencies and omissions in all of the above key aspects of assessment and care.

5 The 2002 Chief Medical Officer’s report into ME/CFS made a number of specific and helpful recommendations regarding service development. The subsequent injection of ring-fenced funding from the Department of Health resulted in a number of new services opening. However, some parts of England still have no local specialist service to whom patients can be easily referred and some of the existing services are experiencing serious problems with funding.

6 The MEA submission highlights positive aspects of the CMO report that have still not been acted on by those responsible for funding and providing NHS services.

7 The 2007 NICE guideline on ME/CFS forms the new basis for clinical assessment, diagnosis and management of ME/CFS patients. Almost all of the charities representing people with ME/CFS believe that the NICE guideline has made the management situation worse because of their ‘one size fits all’ approach, which involves only recommending cognitive behaviour therapy and graded exercise therapy. This approach fails to take into account the fact that large numbers of people with ME/CFS report that these two treatments are either ineffective or cause a worsening of their condition – but this is all that is being offered in the way of management to significant numbers of people..

8 The MEA submission explains why the recommendations on management in the NICE guideline are a major stumbling block when it comes to providing services for people who are not going to be helped by CBT or GET.

Read on here:  http://www.meassociation.org.uk/content/view/911/161

—————————-

Action for M.E. has published a report on the 1st Oral Evidence session

Report of Day 1 of the APPG inquiry into NHS service provision for people with M.E.

Based on notes by Sir Peter Spencer, CEO, Action for M.E.

At 2pm 9 July, the All Party Parliamentary Group inquiry into NHS service provision for people with M.E. met in Committee Room 8 in the Houses of Parliament for its first session of taking oral evidence from witnesses.

Des Turner MP took the chair and was joined by the Countess of Mar, Andrew Stunell MP and Tony Wright MP. The other member of the inquiry team, Peter Luff MP, was unable to attend on this occasion. It is understood that a large amount of written evidence has already been received from patients, patient groups and from various parts of the NHS involved in service provision.

The oral evidence was recorded and the intention is that it will be typed up and made publicly available probably via the APPG website (www.appgme.org.uk ).

The proceedings began quite rightly by taking oral evidence from patients. Three people had been selected from those who had sent in written evidence. They were Cathy Fry from Sussex, Jo [Ed: Joy] Birdsey from Kent and Sally Phillippe from Middlesbrough. The inquiry team invited each person to expand upon their personal experience of the illness by asking questions about the availability of services for their M.E. and the nature of those services.

All three had had significant problems with accessing appropriate care.

In Sally’s case she has still had no help apart from a diagnosis 12 years ago because there are virtually no M.E. services in Teeside – an area with a population of 670,000. Her local Primary Care Trust (PCT) had refused to fund a referral to services outside of their area. Sally explained that she felt very angry not only about her own experience but also on behalf of the large numbers of other people who had also not been given the help they need from the NHS.

Jo had found her local PCT in Kent to be extremely difficult, putting “M.E. at the bottom of the list” and being unwilling to enter into discussion about priorities for treating M.E. patients. She illustrated her own case with a graphic account of a particularly badly delivered set of Cognitive Behavioural Therapy (CBT) sessions.

Cathy encountered great difficulties with getting the help she needed from the NHS in Sussex over many years. She had finally decided to try the Lightning Process (LP) when her GP told her that although he was very sceptical, he had been astonished by the result experienced by one of his patients. Despite her own misgivings, Cathy tried LP and to her own astonishment it has produced such an improvement that she now describes herself as recovered. It was recognised by the inquiry team that LP does not work for all patients and that many are disappointed. It is also not available from the NHS and has to be paid for by the patient – £560 in Cathy’s case.

A common theme that emerged was the difficulty of finding GPs who are informed about M.E. and are supportive. Tony Wight asked the witnesses if it would be helpful for GP practices to have M.E. trained nurses to help GPs with M.E. patients. The response was a cautious yes but only if they are properly trained and are able to undertake domiciliary visits. It was important for patients to have access to the doctor as well as to the nurse.

The second part of the session took evidence from six patient representative groups namely:

• Peter Spencer – Action for M.E.
• Charles Shepherd – ME Association
• Mary-Jane Willows – AYME
• Doris Jones – 25% Group
• Christine Harrison – BRAME
• Jill Piggott – Worcester M.E. Support Group [Ed: Jill Pigott - Worcestershire M.E. Support Group]

Only 45 minutes were left for this final part of the session which had been interrupted several times when MPs and the Countess had to leave for votes in both chambers of the House. Each witness made an opening statement highlighting aspects that they wished to be considered by the inquiry team.

In its written evidence, Action for M.E. has already submitted the report M.E. 2008: What progress? Peter Spencer said that he would wish to cover during the evidence session the key findings and the main recommendations, including those relating to lack of service provision for children and the severely affected.

Our survey showed some improvement in NHS services since 2001 but the rate of improvement has been far too slow.

Peter also challenged the undue weight given by the NHS to Randomised Controlled Trials (RCTs) quoting from the 2005 National Service Framework for Long Term Conditions that “RCTs and other quantitative methods are not  necessarily best suited to research questions involving long term outcome, varied populations with complex needs and assessment of impact on quality of life rather than a cure.”

He also submitted a copy of the views of the Chair of NICE Sir Michael Rawlins, in a speech given in October 2008 which expresses serious reservations about RCTs being put on an undeserved pedestal. He said, “Their appearance at the top of hierarchies of evidence is inappropriate; and hierarchies themselves are illusory tools for assessing evidence.” Sir Michael had also questioned the “generalisabilty” of RCTs whereby limited data from trials is extrapolated to a wide population. Peter stated that this was precisely what had happened with the RCTs which had involved ambulant M.E. patients and that these trials had been given disproportionate weight in drawing up treatments available from the NHS. Other points raised by Peter included:

. how the Department of Health and Ministers remain accountable for the overall delivery of M.E. services when decisions on service delivery are delegated to so many individual Care Commissioners in Primary Care Trusts

. health economics are relevant. The annual cost to the UK of the burden of M.E. was estimated in a study done in conjunction with Sheffield Hallam University in 2002/03 as being £3.4 billion at 2002 economic conditions.

Updating that number for inflation gives estimates of £4.14-£6.4 billion per annum at 2008 prices. This is an area which merits further work to bring it up to date.

Peter also expressed strong support for some valuable points raised by his fellow witnesses, notably:

. the need to investigate the problems that patients still encounter with GPs who are sceptical or ill informed about M.E. – or both.

He illustrated this by reading out anonymous excerpts from patient narratives acquired in Action for M.E.’s 2008 survey:

www.afme.org.uk/res/img/resources/Survey%20Summary%20Report%202008.pdf

Charles Shepherd has recommended that the Royal College of GPs gives evidence at the next session. Action for M.E. agrees

. the value of a National Services Framework specifically for M.E. because this would be enforceable and set standards of care which all PCTs throughout England would have to provide

. the need to engage with the Department of Schools and Education to raise awareness and understanding of the particular problems faced by children with M.E. and their families.

It would be fair to say that all of the patient representative organisations were frustrated by the limited time available for their oral evidence. Nonetheless, a lot of powerful points were made and Action for M.E. and the other organisations have all made substantial written contributions.

On Thursday 16 July the inquiry team meets again this time to hear evidence from the Department of Health as provider of NHS services.

It is hoped that witnesses will include a Government Minister as well as senior figures from the NHS. The session is scheduled from 2-4 pm in Committee Room 18 in the House of Commons.

The general public are able to attend. If you would like to see this piece of history being made, you need to plan to arrive by 1.30 pm to allow time for the security checks and volume of queuing which is unpredictable.

Wheel chair access is available and the House of Commons staff are extremely helpful. Do check the APPG website close to the date to confirm that the location has not been changed. The link is: www.appgme.org.uk  

Ends

—————————-

ME agenda: Notes:

[1] The APPG on ME Inquiry into NHS services for people with ME is an unofficial inquiry being undertaken by an ad hoc committee of parliamentarians. The inquiry has not been commissioned and is not being undertaken by a Parliamentary committee, Select Committee or Standing Committee. The Inquiry and any report that results out of it does not have the authority of either of the Houses of Parliament or any government department.

“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.” Philippa Wainwright, Office of the Parliamentary Commissioner for Standards

[2] It is reported that the CMO, Sir Liam Donaldson, has been invited to attend the second evidence session on 16 July.  It remains  unconfirmed whether Sir Liam has accepted this invitation.

[3] Dr Des Turner, MP, Chair of the APPG on ME who also Chairs the APPG on ME Inquiry into NHS services for people with ME is a Patron to the Sussex & Kent ME/CFS Society.  It is not known whether Dr Turner will remain Patron to the Sussex & Kent ME/CFS Society following his intention to stand down at the next general election.

[4] Connie Nelson has reported via Co-Cure (11 July 2008) that testimony on LP was included in the APPG on ME NHS services Inquiry and queries whether this might be related to the following: 

New adviser

Dr Michael Broughton, who is in charge of the Mid Sussex-based M.E. services, has joined the Sussex ME/CFS Society as its medical adviser. (Brighton Argus, p 15, 27/06/09)

Phil Parker at Swallows
http://digbig.com/5baaxp

Sunday, March 1, 2009 at 8:26PM

Phil Parker visited Swallows Retreat to meet with Dr. Michael Broughton, Consultant Specialist ME/CFS Sussex, and Colin Barton of the Sussex and Kent ME Society.

They joined Linda for a Summer barbecue in Swallows garden, looking at its best in July, and thirty graduates of the Lightning Process for M.E. at Swallows, who enjoyed the opportunity to thank Phil Parker, Developer of the Lightning Process for the difference he has made in their lives.

Some took the opportunity to swim in the pool and the party went on after Dr. Broughton and Phil Parker had to return to their respective clinics.

Dr. Mike Broughton and Phil Parker are now in consultation about further clinical trials beyond the year long one currently being undertaken with Linda’s Lightning Process participants at Swallows.

—————————

Ed: Please note that ME agenda is unable to enter into any correspondence around the Lightning Process with LP practitioners, members of the public, media or others.

Hansard: Vaccine Damage Compensation Debate 8 July 2009

Hansard: Vaccine Damage Compensation Debate: Westminster Hall, 8 July 2009

Dr Ian Gibson, who has recently stood down as MP for Norwich North, is a champion of the mass vaccination of young girls with Cervarix, the cervical cancer vaccine.  Below, I am posting the full text of two important Parliamentary Debates both relating to vaccine damage.

In November 2006, the Group on Scientific Research into ME (the “Gibson Inquiry”) published a 32 page report resulting out of an unofficial inquiry that had been chaired by Dr Ian Gibson. Dr Gibson launched his inquiry, in the summer of 2005, “to assess the progress of scientific research on ME since the publication of the Chief Medical Officer’s Working Group Report into CFS/ME in 2002″ with the objective that its findings would “stimulate public debate on the subject of ME and act as a catalyst for increased funding of research”.

The “Gibson Report” can be read here: http://www.erythos.com/gibsonenquiry/Report.html 

Whilst this unofficial document generated much debate amongst its constituency of interest, the ME community, it received little political or media attention.

Despite Dr Gibson’s assurances at the May 2006 Invest in ME conference that his panel intended to consult before launching its final report, copies were emailed out to all MPs and sent to selected ministers and government departments with no consultation process having first taken place. The published document was littered with errors, misconceptions, ambiguities and contradictory statements.  All five national ME patient organisations – Action for M.E., The ME Association, AYME, The Young ME Sufferers Trust, the 25% ME Group, advocates and individuals had called on the inquiry panel to amend and review specific sections within the report –  for as it stood, the document could not be considered fit for purpose. 

On 6 February 2007, Dr Gibson chaired a public meeting, in London, to discuss the content of the report and how it might be used as a campaigning document. At this meeting, Dr Charles Shepherd raised a number of concerns in relation to the report’s content, on behalf of the ME Association and the wider ME community, including a request for factual errors in the section on benefits to be addressed (errors since reiterated by journalists) and around the panel’s views and opinions on the issue of the potential link between vaccinations and the onset of ME.

The GSRME panel disbanded shortly after the public meeting in early 2007.  No amendments to the document were made because the panel “owned” the report and Dr Gibson considered that he had no mandate to amend a document authored by a now disbanded panel. With no consideration of a process for draft consultation and amendments written into the panel’s Terms of Reference and as an unofficial committee, with no accountability to any agency, government department, commissioning body or organisation, the errors, misconceptions and ambiguities within the document remain. 

Page 22 of the “Gibson Report”, states:

“3.3.4 Vaccination

“Vaccination is often blamed for unexplained outbreaks of illness and regularly appears in the media being accused of such. The Group found that there is no strong evidence to link CFS/ME to vaccination and it is unlikely to be a cause…”

Extract from unofficial transcript prepared from audio recording of the public meeting held by the “Gibson Inquiry” panel in London, 6 February 2007:

[Extract picks up towards the end of the first half of the meeting]

Dr Charles Shepherd (Medical Advisor, ME Association) (CS): The second quibble is in 3.34 and what you said about vaccinations. I think your wording there is really going to cause people problems by saying that the Group found there is no strong evidence to link CFS/ME to vaccination and it is unlikely to be the cause. It is, I believe a cause or trigger factor in a significant minority of people with this – I’ve probably got more patients in the UK that anyone else with vaccine induced ME – these are anecdotal cases, OK – I think I’ve probably got about 200.

Dr Ian Gibson, (former MP for Norwich North) (IG): Well, we didn’t want to get into anecdotal things…

CS: I know…

[Ian Gibson talks over Charles Shepherd: ??????????]

CS: …but if you looked at your experts who gave evidence – besides myself, Weir, Pinching, Byron Hyde – all who reported anecdotal cases of vaccinations…

IG: Of association with vaccination…

CS: Of association, and the CMO’s Report acknowledged…we actually managed to get in into the CMO’s Report…

IG: We have to be very careful we don’t say it’s the cause of something.

CS: Yes, but I think you are over cautious, there, and you know, we’ve struggled to get these people industrial injury benefits and it really is a struggle and that statement is not going to be helpful…

———————————————–

Vaccine Damage Compensation Debate: Westminster Hall, 8 July 2009

Hansard

http://www.publications.parliament.uk/pa/cm200809/cmhansrd/cm090708/halltext/90708h0010.htm

8 July 2009 : Column 307WH

Vaccine Damage Compensation
4 pm

Ian Stewart (Eccles) (Lab): I am pleased to have the opportunity to raise this issue today as chair of the all-party group on vaccine damaged children. I preface my remarks, as I always do, by saying that the all-party group supports a public vaccination programme and the protection of workers in the work place. We recognise the role that vaccination plays, and has played, in the reduction and eradication of disease, and like everyone, I want protection against disease for my nearest and dearest, and for everybody else’s too.

Next meeting of the APPG on ME: Wednesday 8 July 2009

Three upcoming events this week:

APPG on ME meeting

The next meeting of the All Party Parliamentary Group on M.E., chaired by Dr Des Turner MP, will take place on Wednesday 8 July 2009, Committee Room 19*, House of Commons, 1.30-3pm.

*Please note this change of venue which was previously given as Committee Room 20

The meeting will also serve as the group’s AGM.  Committee officers holders for the next parliamentary year will be elected (Dr Gibson is no longer Secretary to the APPG on ME having recently stood down as MP for Norwich North) and the future work of the APPG on ME will be discussed. No invited speaker for this meeting has been announced.  Members of the public are permitted to attend these meetings (please see my note of clarification around the status of membership of the APPG on ME at the end of this post).

Agenda for Wednesday’s meeting

 

APPG on ME Inquiry into NHS Services for people with ME

There is considerable confusion about the dates and times for these sessions since the APPG on ME website states:

“Evidence sessions are likely to commence 14 July 2009 and a later notice will give details of these.”

But no notice has been issued setting out the dates and times for these oral hearings/evidence sessions by either the APPG on ME committee, the inquiry panel Chair, Dr Turner, or the secretariat to the APPG on ME.

According to unofficial reports, oral hearings for this inquiry are being held, this week, on Thursday, 9 July (the day after the APPG on ME meeting) and last week, invitations were apparently received by some members of the ME community to attend in order to present oral evidence.  No complete list of attendees has been issued.

It is assumed that (as was the case with the oral hearings for the “Gibson Inquiry”) these hearings are intended to be held in public.  Why Dr Turner has failed to issue a notice and why the secretariat to the APPG on ME has failed to chase Dr Turner for one, isn’t clear.

Some readers will recall that in 2006, two of the oral hearings for the “Gibson Inquiry”, which had been intended to be held in public, took place virtually in camera because Dr Gibson’s administrative support staff failed to circulate a notice advertising the dates and times of these meetings and the names of those invited to give evidence.  So very few of those who would have liked to have attended these two hearings were in a position to do so. 

It is disturbing that once again, no agenda for the first of these oral hearings has been circulated by Dr Turner.  There are also concerns that some of those who have made written submissions have received no acknowledgement of their submission, whereas others have. 

If you were hoping to attend the oral hearings please contact Dr Turner, directly, at the email address or through his parliamentary office as I have no information, myself, about the hearing said to be taking place on Thursday this week.  If any information filters out I will post an update.   

Dr Des Turner:  turnerd@parliament.uk   Parliamentary Office: 020 7219 4024

This is, in any case, a poor choice of week for the ME community for the holding of oral hearings/evidence sessions – with the APPG on ME meeting on Wednesday and the Royal Society of Medicine’s “Medicine and Me” series event taking place on Saturday, 11 July.  Attendance of the RSM event is by reservation of seat.  

For information on the RSM “Medicine and me” series event: ME and CFS – Hearing the patient’s voice, Saturday, 11 July see:

http://www.rsm.ac.uk/academ/x2g106.php

———————-

Minutes of previous APPG on ME Meetings

The APPG on ME website now has PDF copies of Minutes of APPG meetings going back to 31 January 2001 collated at:  http://www.appgme.org.uk/minutes/mintues.html

Clarification regarding membership of the APPG on ME

There have been misunderstandings on some forums that AfME (Action for M.E.), the MEA (The ME Association), AYME (Association of Young People with ME), TYMES Trust (The Young ME Sufferers Trust), The 25% ME Group, ME Research UK, BRAME (Blue Ribbon for Awareness of ME) and RiME (Campaigning for Research into ME) are all members of the All-Party Parliamentary Group on ME.

None of the above are members of the APPG on ME.

In the case of Associate Parliamentary groups, applications for membership may be accepted by the group’s officers from organisations, interest groups, commercial concerns and individuals other than MPs or Members of the House of Lords.

But the All-Party Parliamentary Group on ME is not constituted as an Associate Parliamentary Group and therefore only Members of the House of Commons or the House of Lords are permitted membership of the APPG on ME, and only Members of the House of Commons or Lords have voting rights at its meetings.

So the only members of the APPG on ME are parliamentarians.

From the office of the Parliamentary Commissioner:

“Groups are only required to register with us the names of their officers and of 20 ‘qualifying members’. The full membership list, including names over and above that, resides with the group and it is for them to ensure that it is comprehensive and up to date. [...] Any MP (ie not just signed up members of the group) is entitled to turn up at any meeting of the group, and to speak and vote at the meeting – unless a subscription is charged in which case voting may be restricted to paid-up members of the group.”

The APPG on ME group’s current office holders and the twenty qualifying members (made up of cross party MPs and members of the House of Lords) can be viewed at the link, below.

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi389.htm

Under “BENEFITS RECEIVED BY GROUP FROM SOURCES OUTSIDE PARLIAMENT” AfME and The ME Association are listed as jointly providing the secretariat to the Group.

“Action for ME and The ME Association both provides secretarial support (addressing and stuffing envelopes, taking minutes, photocopying).”

AfME and the MEA alternate the task of minute taking and circulation of minutes and agendas for these meetings but they are not members of the APPG Group and their status as organisations and that of their representatives in relation to the Group is no different to that of any other organisation that sends a representative to attend these meetings.

Although APPG groups are not permitted to advertise their meetings as “Public Meetings”, meetings of the APPG on ME are held in House of Commons committee rooms and are open to members of the public, that is, national ME patient organisations, representatives of the committees of “local” and regional ME support groups and other interested parties; they are also open to individual members of the ME community and their carers, who can and do regularly attend and contribute to these meetings.

So none of the five national registered membership ME patient organisations listed above are members of the APPG on ME but they attend APPG meetings, send their representives to meetings, and in the case of AfME and the MEA, provide the secretariat function.

ME Research UK : a research organisation and a registered charity (Scotland), represented at APPG on ME meetings by Mrs Sue Waddle, a former trustee of Invest in ME.

BRAME : unregistered, non membership, run by Christine Harrison and her daughter, Tanya. Both Christine and Tanya attend APPG on ME meetings.

RiME : unregistered, non membership, run by Paul Davies. Paul Davies attends APPG on ME meetings, sometimes supported by other individuals.

A number of ME sufferers and carers of ME sufferers attend APPG on ME meetings and their names are sometimes listed as attendees in the minutes of meetings; their contributions to these meetings are minuted.

I hope this clarifies any misconceptions about policy and proceedings at these meetings and the status of the organisations and individuals who attend them.

A Guide to the Rules on All Party Groups can be downloaded here:

http://www.parliament.uk/documents/upload/PCFSGroupsRules.pdf

RSM “Medicine and Me” event: ME and CFS – Hearing the patient’s voice

Note: One of the speakers at this RSM “Medicine and Me” event will be Professor Stephen Holgate, University of Southampton.

Professor Holgate chairs the “CFS/ME multi-disciplinary panel” convened by the MRC, last year. It’s not clear from the RSM event programme whether Professor Holgate is participating in this event on behalf of the MRC and in his capacity as chair of this panel but I would imagine that this is the case.

Professor Holgate is also a member of the MRC’s Physiological Systems and Clinical Sciences Board (PSCSB) and he chairs the MRC Respiratory Research Collaborative.  He is also chair of the CFS Research Foundation’s Research Committee and a member of the James Lind Alliance Strategy and Development Group.

The inaugural meeting of the MRC “CFS/ME multi-disciplinary panel” was held in December 08.  A second meeting took place in March, this year.  But this panel’s Terms of Reference have yet to be agreed and published…

Since 25 April 08, I have had an FOI request lodged with the MRC for a copy of the panel’s Terms of Reference. Further enquiries made of the MRC exactly a year later, on 26 April 09, elicited the following response from Ms Rosa Parker, MRC Corporate Governance and Policy:

“At their second meeting the MRC’s CFS/ME expert group requested further amendment to the terms of reference. The final terms of reference will be published on the MRC’s website once they have been confirmed, as agreed previously we will also send you a copy as soon as they are available.”

I had also asked for the official name of this panel but this enquiry was not addressed – though Ms Parker has referred twice to the panel as the “MRC’s CFS/ME Expert Group” .

On 12 December, last year, I obtained from the MRC, under the FOI Act, a list of panel members and their affiliations. I was advised at the time  that the names of the panel members would be published on the MRC website in due course. Nearly six months later, I have yet to find this information on the MRC’s website. 

For a list of current members of the “CFS/ME multi-disciplinary panel” or “CFS/ME Expert Group” see:

Freedom of Information Request: MRC CFS/ME multi-disciplinary panel members list

For a report by Action for ME (AfME) of the inaugural meeting of the multi-disciplinary panel see:

MRC multi-disciplinary panel “expert panel”: inaugural meeting

 According to Sir Peter Spencer’s report of the first meeting:

“A research collaborative will be formed from interested parties in the UK who have a stake in scientific research into M.E./CFS. The nucleus is the list of those who attended this meeting.  It is envisaged that the group will expand, bringing together medical scientists from a wide range of different disciplines, funding organisations, royal colleges, professional organisations, patient charities and other relevant parties, to agree a common agenda for increasing the scale and quality of research into M.E. in the UK, along the lines of the achievements of the UK Respiratory Research Collaborative…”

No other patient organisations, other than Action for M.E. and the ME Association appear to be having any form of involvement in the business of this panel.

Professor Stephen Holgate’s presentation at this forthcoming RSM event is called “ME: a research orphan for too long”. Given the MRC’s track record for funding research and the length of time it is taking this panel to actually get down to business you can pretty much guarantee that ME will continue a “research orphan” for many years to come…

—————————

Royal Society of Medicine Event in the “Medicine and Me” series

http://www.roysocmed.ac.uk/academ/x2g106.php

Medicine and Me: ME and CFS – Hearing the patient’s voice

Saturday 11 July 2009

Venue: The Royal Society of Medicine, 1 Wimpole Street, London, W1G 0AE

organised by the Royal Society of Medicine and The ME Association, Action for ME, AYME, The 25% ME Group and The Tymes Trust

‘Medicine and Me’ conferences, initiated and developed by the Royal Society of Medicine, are specifically designed for patients. These meetings bring together patients, their families, carers, advocates, patient support groups, clinicians and researchers to discuss care and research issues in a particular condition.

This ‘Medicine and Me: ME and CFS’ conference is organised jointly by the Royal Society of Medicine, The ME Association, Action for ME, AYME, The 25% ME Group and The Tymes Trust.

‘Medicine and Me’ meetings aim to provide a forum in which patients’ concerns about their illness are given top priority. The meetings provide an opportunity for patients and their families to share experiences, to hear about the latest research and treatment, to discuss treatment choices and access to treatment, and to question the experts on a wide range of issues.

This meeting will focus on the difficulties and delays in diagnosis, ME and CFS in children and adolescents, the existing range of treatments, and the latest research and its impact on the development of new, disease-modifying treatments.

The audience at ‘Medicine and Me’ meetings typically comprises patients, their families, carers and advocates, representing at least 70% of those present; and clinicians and researchers, representing not more than 30%. Clinicians will include doctors, specialist nurses and all other health professionals involved in the treatment and care of patients with ME and CFS.

This meeting will be suitable for all those affected by ME and CFS

Registration Details:
Fellow: £50
Associate: £30
Trainee – Fellow: £30
Retired Fellow: £30
Student Members: £20
Non-Fellow: £70
Allied Health Professional: £35
Nurse: £35
Trainee – Non-Fellow: £35
Student: £25
Patient: £10
Carer: £10
CPD: 3 credits

[Registration button]

Agenda:

12.15 pm

Registration and coffee

1.00 pm

Welcome address
Dr David Misselbrook, Dean, RSM & Ms Jane Colby, Executive Director, The Young ME Sufferers Trust

Session One
Chair: Dr Charles Shepherd, ME Association

1.10 pm
Diagnosis: the patient’s perspective
Mr Jez Harding, Jez Harding Consulting Ltd, London

1.25 pm
Patient videos

1.35 pm
A rational, efficient and practical approach to diagnosis
Dr Abhijit Chaudhuri, Essex Centre for Neurosciences

1.50 pm
Questions

1.55 pm
ME in children and adolescents: the patient’s perspective
Miss Shannen Dabson

2.10 pm
Addressing the educational impact of ME
Mr Hardip Begol, Department for Children, Schools and Families, London

2.25 pm
Questions

2.30 pm
Treatment: the patient’s perspective
Ms Annette Barclay

2.50 pm
Treatment- evidence based and pragmatic approaches
Professor Anthony Pinching, Peninsula Medical School

3.05 pm
Questions

3.10 pm
Tea break

Session Two
Chair: Sir Peter Spencer, Action for ME

3.35 pm
Research: what do patients want and why isn’t it happening?
Dr Neil Abbot, ME Research UK and University of Dundee

3.50 pm
ME: a research orphan for too long
Professor Stephen Holgate, University of Southampton

Session Three
Chair: David Misselbrook, Dean, RSM

4.05 pm
Panel discussion
All speakers and Dr Nigel Speight, adviser to ME Association and Professionals Referral Panel, The Young ME Sufferers Trust

4.55 pm
Closing remarks
Mrs Mary-Jane Willows, Association for Young People with ME

Mr Simon Lawrence, The 25% ME Group

Dr David Misselbrook, Dean RSM

5.00 pm
Close of meeting