Whittemore Peterson Institute XMRV retrovirus study link with CFS: Media Round up 10

Whittemore Peterson Institute XMRV retrovirus study link with CFS (Science journal): Media Round up 10

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

This is the tenth Round up of media coverage of the Whittemore Peterson Institute XMRV study published, last week (08.10.09), in Science journal.  Round ups also include commentary from patient organisations, patient community websites and bloggers and links for related material.

 

Press Release:

The European ME Alliance  www.europeanmealliance.org 

Eight-Country European ME Alliance Issues Kudos to WP Institute, Pledges Cooperation
October 16, 2009

The European ME Alliance www.europeanmealliance.org  is a group of European organizations formed less than a year ago to encourage more ME/CFS biomedical research funding – Belgium, Denmark, Ireland, Germany, Norway, Sweden & UK.
__________________

ME Alliance Press Release Oct 16:

The European ME Alliance (EMEA) wish to congratulate the Whittemore- Peterson Institute for the painstaking, professional and groundbreaking work which its staff have performed, along with the National Cancer Institute and the Cleveland Clinic, which has resulted in the publication of the findings of a novel virus XMRV in causing or influencing ME.

The members of EMEA recognize that the staff at WPI are performing research of the highest quality.

The publication of this research in Science magazine is itself an amazing achievement.

This work has been achieved in an amazingly short period of time and the tenacity, dedication and sheer excellence of the WPI has brought hope to millions of people, patients, carers and friends, in Europe and further afield.

EMEA announces its continued full support for WPI and hopes to be able to become a stronger partner in the future.

Signed by all members of the European ME Alliance:

Belgium – ME/CFS Association (Nieuwrode, Belgium)
Denmark – ME-NetDK
Ireland – Irish ME Trust
Germany – Fatigatio e.V.
Norway – Norges ME-forening
Spain – Liga SFC
Sweden – Riksföreningen för ME-patienter
UK – Invest in ME

The European ME Alliance
www.europeanmealliance.org

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Tate Mitchell reports via Co-Cure mailing list    16 October 2009

“The CFIDS Assoc. just posted some updates on their Facebook page, including a link to an interview with Laura Hillebrand, author of Seabiscuit, by The New Yorker, the Oct. 29-30 CFSAC meeting agenda is published, which is to include a presentation by Dr. Daniel Peterson entitled ‘XMRV Association with CFS’, and CFIDS Assoc. Scientific Director Suzanne Vernon writes about the new XMRV findings”

http://www.facebook.com/CFIDSAssn

Oct. 29-30 CFSAC agenda

http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html

Interview with Laura Hillebrand

http://www.newyorker.com/online/blogs/backissues/2009/10/back-issues-laura-hillenbrand.html

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Commentary

http://www.facebook.com/note.php?note_id=185660730538&ref=mf

http://www.cfids.org/cfidslink/2009/110402.asp

Xplained

By Suzanne D. Vernon, PhD
Scientific Director, The CFIDS Association of America

The announcement on October 8, 2009, that an infectious retrovirus called XMRV (xenotropic murine-related retrovirus) was linked to CFS, could be the game-changing scientific event we have been waiting for. Whether XMRV provides the long-awaited causal link will depend on the findings described in the Science paper being replicated by another laboratory in another group of CFS patients. To help clarify what we know, let’s review the findings.

Dr. Judy Mikovits and her team at the Whittemore Peterson Institute for Neuro-immune Disorders (WPI) made a very insightful connection three years ago. XMRV was first described in prostate cancer in 2007 by investigators at the Cleveland Clinic, who also reported that XMRV-positive prostate cancer patients have alterations in RNase L, an antiviral immune system pathway. The WPI investigators knew that RNase L activity is also altered in blood cells from CFS patients and they made the decision to look for XMRV in CFS patients with this immune defect.

When scientists want to find a virus, we look for it in the sickest individuals because often this is where there is likely to be the highest levels of a virus, if present. Dr. Dan Peterson has been caring for and researching CFS patients since the 1984 Incline Village outbreak, so he identified CFS patients with prolonged disabling fatigue, cognitive impairment, and documented laboratory immunological abnormalities (including altered RNase L activity) to hunt for XMRV.

The WPI laboratory team detected XMRV sequences in 68 of 101 (67%) CFS patients tested and in 8 of 218 (3.7%) healthy control subjects. The Cleveland Clinic confirmed the presence of XMRV in a subset of these same CFS cases, 7 of the 11 (64%) samples from WPI. The Cleveland Clinic researchers found that the CFS XMRV was similar to prostate cancer XMRV, and not a mouse virus (murine leukemia virus) that could have been a contaminant explaining the discovery.

The investigators designed several new assays to understand XMRV. They looked to see if XMRV was expressed in peripheral blood mononuclear cells (PBMCs) of CFS patients. PBMCs from 19 of 30 CFS patients expressed XMRV proteins compared to 0 of 16 PBMC samples from healthy controls. They also wanted to know which cells harbored XMRV; they found it in T and B cells in the blood of one CFS patient. The investigators looked to see if the XMRV from CFS patients was infectious. Both blood cells and plasma (the cell-free fraction of blood) from XMRV-positive CFS patients were able to transmit this virus to a susceptible cell line, indicating infectiousness in laboratory culture. Finally, they wanted to know if XMRV stimulated the immune system to produce antibodies. Plasma from 9 of 18 CFS patients had antibodies that reacted with a virus protein similar to that found in XMRV, compared to no reaction from plasma of 7 healthy controls.

This Science paper tells us that XMRV plays a possible role in CFS pathogenesis in these CFS patients. How much we can generalize these findings to other CFS patient populations? That answer will depend on the results of replication studies.

The design of replication studies should include CFS patients who are similar to those selected by Dr. Peterson and reported in the Science study. Unfortunately, the details about the CFS patients were not sufficient to enable independent investigators to select similar CFS patients. For example, we need to know the age, sex, duration of illness, medical history, and medication use, to name a few characteristics, of the studied patients to select CFS patients who as similar as possible to the original group. We also need to know something about the healthy control subjects, since there is nothing in the paper or supplementary materials that describes how they were selected. Independent replication studies should also include patients with mild and moderate CFS, at least one chronic disease control group (e.g., multiple sclerosis, lupus) and sex and age-matched healthy controls. We are actively working with several independent research groups to expedite these studies.

While these exciting studies of XMRV continue, the CFIDS Association continues its support of our funded investigators. It’s important to remember that HIV was discovered to be the cause of AIDS 26 years ago, but worldwide research on AIDS treatment, cure and prevention continues today. Our funded investigators’ research on why EBV triggers CFS, whether ion-channel receptors are markers of fatigue, why CFS patients have higher rates of leaky gut, why CFS patients have slow blood flow to the brain, why CFS patients have metabolic disturbances in the brain, and how we can bring this information, as well as XMRV, together using powerful computational tools are all important as we work together to solve CFS.

References:
Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M,  Silverman RH, Mikovits JA. Science 8 October 2009. 1179052.

Supporting online material for Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, Mikovits JA. Science 8 October 2009.

A new virus for old diseases? Coffin JM and Stoye JP. Science 8 October 8 2009.

Information about the Association’s research program:
http://www.cfids.org/about/acceleratecfsresearch.asp

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Commentary

Professor Andrew Lloyd AM
Director, Centre for Infection and Inflammation Research University of New South Wales

http://www.me-cfs.org.au/node/448

New Retrovirus – Comments by Professor Andrew Lloyd

©2002 – 2009 ME/CFS Society of NSW Inc. 

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Commentary

RESCIND would like to emphasize what we feel are probably the two most powerful quotes on record in M.E. (C.F.S.) history…

Dr. Nancy Klimas as quoted from the Q & A New York Times article “Is a Virus the Cause of Fatigue Syndrome?” – posted online Oct 15, 2009

http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/

“But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.”

Dr. Marc Loveless as quoted by Tom Hennessy from A Brief History of the Name Change Movement

http://www.rescindinc.org/history.htm

Dr. Shelekov looked puzzled and maybe a little skeptical. But Dr. Marc Loveless, sitting next time to him said, “Dr. Shelekov, this man (meaning me) is telling you the truth. I have treated more than 2500 AIDS and CFS patients over the past 12 years. and my CFS patients are MORE sick and MORE disabled, every single day, than my AIDS patients are, except in the last two weeks of life!”

I immediately said to Dr. Loveless that “YOU have to use that line in every speech you give on this illness for the rest of your life!” (in 1994, Dr. Loveless gave this same testimony under oath to the US Congress).

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Radio broadcasts

Science Friday on NPR

“Science Friday is a weekly science talk show, broadcast live over public radio stations nationwide from 2-4pm Eastern time as part of NPR’s ‘Talk of the Nation’ programming.”

http://www.sciencefriday.com/about/listen/

Podcast:  Virus Tied to Chronic Fatigue Syndrome

Clicking on this link will start download of mp3 Podcast from Science Friday site:

http://podcastdownload.npr.org/anon.npr-podcasts/podcast/510221/113890711/npr_113890711.mp3 

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Patient community websites and blogs

Cort Johnson’s Phoenix Rising website

http://aboutmecfs.org/Rsrcs/XMRVResources.aspx

The news on XMRV is breaking fast and items are being added regularly to the XMRV Resource Center on Phoenix Rising. The Resource Center has links to scientific articles, analyses by chronic fatigue syndrome specialists (check out the video by Dr. Klimas on CFSKnowledge Center), media reports, Q&A’s, blogs and more.

Hillary Johnson (journalist and author of Osler’s Web)

Website: http://oslersweb.com/

Blog: http://oslersweb.com/blog.htm

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Related links

http://www.transworldnews.com/NewsStory.aspx?id=130725&cat=12

Science and Technology News

Hemispherx Biopharma Finds New Retrovirus in Chronic Fatigue Syndrome

Rochester, New York 10/16/2009 08:55 PM GMT (TransWorldNews)

Hemispherx Biopharma, Inc. (AMEX: HEB) has announced a discovery of a novel retrovirus in Chronic Fatigue Syndrome (CFS). The retrovirus may shed light on the potential mechanism of action of Ampligen, an experimental therapeutic, in CFS. CFS is a debilitating disease of unknown etiology that affects 17 million worldwide…

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About.com 

Fibromyalgia & CFS Blog

http://chronicfatigue.about.com/b/2009/10/16/update-ampligen-for-chronic-fatigue-syndrome-2.htm

UPDATE: Ampligen for Chronic Fatigue Syndrome
Friday October 16, 2009

NEWSBRIEF: We now have an update on the FDA’s much-delayed decision on Ampligen for chronic fatigue syndrome that explains why we’ve been kept waiting for so long….

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Links to scientific coverage

Whittemore Peterson Institute Q and A
Whittemore Peterson Institute Press Release
Science News: Retrovirus might be culprit in chronic fatigue syndrome
New Scientist: Chronic fatigue syndrome linked to ‘cancer virus’
Scientific American: Retrovirus Linked to Chronic Fatigue Syndrome, Could Aid in Diagnosis
Nature: Virus linked to chronic fatigue syndrome
NIH News: Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome

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Previous ME agenda Media Round ups

Round up 10: Whittemore Peterson Institute XMRV retrovirus study link with CFS (Science journal):
http://wp.me/p5foE-2bk

Round up 9: Notice from Dr David Bell, Lyndonville News; Article by Paul R. Cheney MD, PhD:
http://wp.me/p5foE-2aQ

Round up 8: XMRV retrovirus study: Position statement from ME Association 14.10.09: http://wp.me/p5foE-2at

Round up 7: XMRV Retrovirus: Whittemore Peterson Institute: CFS: Media Round up 7: http://wp.me/p5foE-2aa 

Round up 6: XMRV Retrovirus: Whittemore Peterson Institute Chronic Fatigue Syndrome study: Videos and audios: http://wp.me/p5foE-29L 

Round up 5: Supporting Online Material for XMRV Chronic Fatigue Syndrome study: http://wp.me/p5foE-299

Round up 4: XMRV Retrovirus: Whittemore Peterson Institute Chronic Fatigue Syndrome study:
http://wp.me/p5foE-28F

Round up 3: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome retrovirus XMRV in the media: http://wp.me/p5foE-280

Round up 2: Science 9 October 2009: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome link to retrovirus: 08.10.09: http://wp.me/p5foE-27v

Round up 1: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome link to retrovirus: 09.10.09: http://wp.me/p5foE-272

Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome link to retrovirus XMRV

Whittemore Peterson Institute (WPI)   Chronic Fatigue Syndrome   CFS   Infectious Retrovirus   XMRV  Science Express

[Additional reporting, today, will be added under "Latest media coverage"]

Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome link to retrovirus

Media Round up 2

See previous posting:

Science 9 October 2009: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome link to retrovirus: 08.10.09:  http://wp.me/p5foE-272  

 

UK patient organisation responses appended beneath Blogs

Lastest media coverage here:

http://news.google.com/news/story?ncl=doYoQTBj4zPdlyMqTB5EHO59NdXTM&hl=en&ned=us

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Daily Mail  | 9 October 2009

http://www.dailymail.co.uk/health/article-1219207/Chronic-fatigue-caused-retrovirus-say-scientists.html

Hope for ME sufferers as scientists find cause of chronic fatigue disorder

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BBC News  | 9 October 2009

http://news.bbc.co.uk/1/hi/health/8298529.stm

ME virus discovery raises hopes

US scientists say they have made a potential breakthrough in understanding what causes the condition known as chronic fatigue syndrome (CFS) or ME.

“Their research in the journal, Science, suggests that a single retrovirus known as XMRV does play a role in ME…”

[...]

“Dr Richard Grunewald, a consultant neurologist at the Sheffield Teaching Hospitals NHS Foundation Trust who is also on the panel that gives advice to NICE on CFS, said he had reservations about the research.

He said: “The idea that all CFS can be caused by a single virus doesn’t sound plausible to most people who work in the field.  “A lot of the symptoms of CFS are not those of a viral infection.”

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Independent  |  9 October 2009

http://www.independent.co.uk/opinion/leading-articles/leading-article-chronic-neglect-1799885.html

Leading article: Chronic neglect

“Scientists could be on the brink of a breakthrough. We must hope that they are. That would – at least – go some way to compensating for the shameful manner in which sufferers were treated for so long by the medical profession.”

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Independent  |  9 October 2009  |  Steve Connor, Science Editor

http://www.independent.co.uk/news/science/has-science-found-the-cause-of-me-1799944.html

Has science found the cause of ME?

Breakthrough offers hope to millions of sufferers around the world

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Telegraph |  9 October 2009  |  Richard Alleyne, Science Correspondent

http://www.telegraph.co.uk/science/science-news/6276718/Most-cases-of-chronic-fatigue-syndrome-linked-to-virus.html

‘Most cases of chronic fatigue syndrome linked to virus’

Most cases of chronic fatigue syndrome or ME may be linked to a virus, according to research that could lead to the first drug treatments for the disorder that affects millions around the world.

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Science News  |  8 October 09  |  Nathan Seppa

http://www.sciencenews.org/view/generic/id/48157/title/Retrovirus_might_be_culprit_in_chronic_fatigue_syndrome

Retrovirus might be culprit in chronic fatigue syndrome

People with the condition are much more likely than others to harbor a little-known pathogen

“The long, fruitless search for the cause of chronic fatigue syndrome has taken a curious turn. Scientists report online October 8 in Science that an obscure retrovirus shows up in two-thirds of people diagnosed with the condition. The researchers also show the retrovirus can infect human immune cells…”

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New York Times  |  8 October 2009  |  Denise Grady

http://www.nytimes.com/2009/10/09/health/research/09virus.html?_r=1

Virus Is Found in Many With Chronic Fatigue Syndrome

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Scientific American  |  8 October 2009  |  Katherine Harmon

http://www.scientificamerican.com/article.cfm?id=chronic-fatigue-syndrome-retrovirus

Retrovirus Linked to Chronic Fatigue Syndrome, Could Aid in Diagnosis

Recently implicated in some severe prostate cancer patients, the retrovirus XMRV has now been found in many with chronic fatigue – changing the landscape for diagnosis and possible treatment

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Reno-Gazette Journal  |  8 October  |  Lenita Powers lpowers@rgj.com

http://www.rgj.com/article/20091008/NEWS/91008028/1321/NEWS

UNR reports major breakthrough for chronic fatigue sufferers

A link between a retrovirus and neuro-immune diseases such as Chronic Fatigue Syndrome has been discovered, scientists working with a research institute at the University of Nevada, Reno announced today.

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Blogs and commentaries:

http://www.psychologytoday.com/blog/emerging-diseases/200910/chronic-fatigue-lyme-medically-unexplained-no-more

Emerging Diseases

Patients at the crossroads of new diseases and chronic ills.

by Pamela Weintraub

October 9, 2009, Integrative Medicine
From Chronic Fatigue to Lyme: Medically Unexplained No More Labeling sick patients psychiatric is medical abuse.

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http://aboutmecfs.org/blog/?p=920

‘Game Changer – the WPI Retrovirus Study – from Bringing the Heat: A Blog From Phoenix Rising.

Cort Johnson’s Blog

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http://www.oslersweb.com/blog.htm?post=638469

Inside the Labyrinth
OUR VIETNAM WAR ENDED TODAY

Hillary Johnson’s (author Osler’s Web) Blog

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Comment from UK patient orgs:

 

Action for M.E. | 9 October 2009

http://www.afme.org.uk/news.asp?newsid=649

News
Researchers find virus in blood cells of CFS patients

Researchers at the Whittemore Peterson Institute in Reno, USA have identified genetic material (DNA) from a mouse virus – murine leukaemia virus-related virus (XMRV) – in 68 out of 101 CFS patients (67%) compared to 8 out of 218 (3.7%) of healthy people.

Further blood tests showed that more than 95% of CFS patients have antibodies to XMRV, indicating they had been infected with the virus, which may then have lain dormant in their DNA.

Dr Judy Mikovits, research director, Whittemore Peterson Institute, is testing a further 500 blood samples collated from patients diagnosed with CFS in London.

Although the sample is small, the results are very promising.

Sir Peter Spencer, CEO of Action for M.E., the UK’s biggest M.E. charity, says:

“It is still early days so we are trying not to get too excited but this news is bound to raise high hopes among a large patient group that has been ignored for far too long.

“If the researchers can go on to prove a definitive cause and effect between this retrovirus and M.E., it will make an enormous difference to 250,000 British men, women and children who have M.E. in this country.

“Action for M.E. has long been calling on the UK Government to invest more in research into the causes of this horrible illness. Once we know the cause, researchers can start working on more effective treatments, preventive measures and ultimately a cure for M.E.”

Read the study, commentary, press release and this morning’s lead story in the Independent.

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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

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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.

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. 

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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

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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.

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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

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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

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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.

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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.

Invest in ME: Statement and letter to Prime Minister (e-petition)

Invest in ME: Statement and letter to Prime Minister (e-petition)

Statement from Invest in ME

6 July 2009

Invest in ME are profoundly disappointed by the continuing indifference to ME which the response to the e-petition from the Prime Minister’s office has shown.

The perfunctory response provides further confirmation that the current government has no intention of taking seriously the plight of people affected by ME.

The lack of attention which the government continues to display toward ME is evident in the uninformed and superficial response.

From the tardiness of the reply (provided over a month after the IiME ME/CFS conference in London was held) to the lack of any real policy being evident toward ME the Prime Minister’s office has demonstrated that the government has no interest in engaging with the patient community and is devoid of ideas as to how ME can be treated.

Invest in ME have responded to the Prime Minister. Our letter has been emailed and sent via Post to the Prime Minister.

A copy of our letter can be found below via the links provided.

Invest in ME have requested a meeting with the Prime Minister and are willing to organise a representation to visit him at any time.

We have also offered to arrange for the Prime Minister to visit a severely affected person with ME in the hope that he would see for himself the desperate needs of people with ME in this country.

We invite all friends of IiME to contact the Prime Minister’s office and voice their opinion.

Meanwhile Invest in ME have had a response from the Chief Medical Officer to our letter to him on ME Awareness Day. We hope to be setting up a meeting with his policy team in the near future.

The response from Invest in ME to the Prime Minister is available here -

http://www.investinme.org/Article-315%20PM%20July%202009.htm

PDF here

The Rt. Hon Gordon Brown MP
10 Downing Street
London SW1A 2AA
United Kingdom

5 July 2009

Subject: Response to the E-Petition to Attend the IiME ME/CFS Conference 2009

Dear Mr. Brown,

In March of this year an e-petition was raised (http://petitions.number10.gov.uk/AttendIiME2009/#detail ) asking the “Minister of Health, Medical Research Council delegates and the Chief Medical Officer to attend the INVEST in ME Conference 29th May 2009 London”. The petition was raised in March 2009 to allow enough time for the question to be raised to the relevant parties before the conference date of 29th May 2009.

On 1st July 2009 (over three months after the petition was raised and two months after the petition was closed) your office replied (http://www.number10.gov.uk/Page19853 ).

Invest in ME are profoundly disappointed by the continuing indifference to ME which the perfunctory response from your office has shown – and yet we hoped that perhaps we could expect more from our Prime Minister.

The petition was a genuine attempt to engage your government and the organizations/officials which you fund with public money. It was an endeavour to provoke some understanding of the issues involved in the current policies toward ME research. By attending the foremost biomedical research conference on ME in Europe your officials would be better equipped to understand the possibilities and the potential available in treating this debilitating illness.

The reply from your office is insulting in its complete lack of engagement of the proposal and of the underlying issues associated with this request.

It gives no joy for us to pronounce that your government is failing a large section of the UK population – people who are chronically ill and who are hoping for leadership and vision from the person who has the power to change things for the better.

Your office states that

“Ministers and the Chief Medical Officer receive a large number of invitations from stakeholders, pressure groups and individuals to attend meetings and events” and “it is not possible to attend the vast majority of these events”.

This was Invest in ME’s fourth annual international conference held in Westminster. We have been asking for the government and the CMO to attend in each of the last four years. The Department of Health has not sent one representative in all of that time.

Your office states that “The Medical Research Council is an independent organisation and it would therefore not be appropriate for the Prime Minister to instruct it.”

The MRC is a publicly-funded organisation “dedicated to improving human health”. It should be accountable to the public. The MRC receives annual ‘grant-in-aid’ funding from Parliament through the Department for Innovation, Universities and Skills and its council members are appointed by the Secretary of State for Science and Innovation.

It is entirely appropriate for the Prime Minister to intervene when there is deliberate bias being operated by this “independent” body which is, nevertheless, supposedly accountable to a government department.

The MRC has provided a total investment of £3,180,900 in funding research projects concerning ME – this money going to psychiatric therapies such as the PACE and FINE trials. Both of these trials are considered meaningless by ME patients and are ridiculed for their lack of scientific rigour in identifying true ME patients. Even those who have participated have criticised these trials. Your government officially recognizes ME as a neurological illness, as does the World Health Organization, yet you allow this “independent” body to avoid funding any biomedical research into ME and instead it supports vested interests who instead use this funding to pursue their own agenda of research into their own chosen fields of psychiatry. The latest ploy by the MRC of creating a panel intent on tying both biomedical and psychosocial factions together will be a liability for future research into ME and we have no faith or belief in their seriousness in looking for appropriate treatments for this illness.

It is a scandal that the MRC causes the prolongation of such an appalling waste of life and scarce resources; that it seems to lack any accountability for its actions (or lack of action); that it does not serve the patient community; that it is systemically flawed with a refereeing system for research proposals that is neither transparent nor fair; and that it ignores requests to attend a conference providing the latest information on biomedical research which is being held on its doorstep and which could lead to improvement in human health.

We cannot comprehend why you and your ministers feel it “inappropriate” to intervene to understand why the MRC policy toward research into ME is a failure.

The crass referral to the UK Clinical Research Network of the National Institute for Health web page in your reply to the petition indicates that there is nobody in your office who really understands anything about ME. We found just two references on that site regarding research for ME (the PACE Trial and the FINE Trial) – using the term chronic fatigue or chronic fatigue syndrome rather than myalgic encephalomyelitis.

The one-size fits all approach of your government, of NICE and of the MRC in supporting only Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) for people with ME – therapies rejected by the ME community – is testament to the lack of ideas and the lack of commitment by your government. We know of no patient groups who welcome studies into CBT and GET apart from two organisations who accept money from your government to support your policies.

NICE was taken to judicial review by ME patients due to their unsatisfactory guidelines for ME. Yet your government does nothing to recognize the dissatisfaction with your and their policies.

Your reply states that –

“some recent findings about a genetic basis of CFS/ME that are providing extremely valuable insights into the causes of, and possible therapies for, the condition these are early research findings that at present have no direct relevance to any predictive or diagnostic gene test for these conditions. However, the Department of Health continues to keep such developments under review and there are well-established mechanisms to evaluate new genetic findings and ensure their proper implementation across the NHS.”

This is a pitiful response which is condemnable by its lack of up-to-date information and patent spin. It is symptomatic of a government which doesn’t understand, doesn’t bother to verify, and cannot be bothered to do anything.

Your “independent” MRC refused to fund world-class research from Dr Jonathan Kerr which is clearly seen by others abroad to be state of the art. Why is public funding for this valuable gene research being constantly refused? It has been funded entirely by small charities and many individuals donate from their benefits because they are so desperate for proper treatments being developed instead of being offered only CBT and/or GET.

If any of your government ministers or officials had bothered to find the time to walk a few hundred metres to the conference venue on 29th May this year then they would have been able to judge for themselves how fatuous the response from your office is.

There is substantial evidence now of effective treatments for some sub-groups of ME. Antivirals are one example yet no funding has been made available for performing clinical trials and PCTs do not allow patients to be given these drugs. Yet how hypocritical the situation is when your Chief Medical Officer allows antivirals to be made freely available to any person suspected of contracting swine flu despite fewer people suffering from this flu variant than ME.

ME is the largest cause of long term absence from school through sickness for pupils and staff yet your CMO refuses to make ME a notifiable illness in schools.

Yet one case of swine flu frequently closes a whole school for weeks!

The DoH is not reviewing the treatments which are available for ME.

The CMO is not recommending research trials be carried out on promising treatments which privately funded research has identified.

Even the most basic and obvious action which should be required – an epidemiological study of ME in the UK – has not been performed by your government.

The use of a current and sound set of clinical guidelines for ME has not yet been standardized. The Canadian Guidelines document – held by most ME advocates as the best of the guidelines for diagnosis – is not advocated yet by the NHS or DoH despite it now becoming the de facto standard across the world.

Quite simply your government’s policy towards ME is non-existent and its attitude toward people with ME and their families is nothing short of scandalous.

Invest in ME has, in its four years of existence, attempted to educate healthcare staff, the media and the public about the real situation with ME, and show the biomedical research which is being carried out and which holds the promise of effective treatments and cures. Consistently your government has refused to acknowledge any of this.

And yet how easy it would be to change this with a clearly defined strategy of biomedical research which could be funded by public and private funding, if there was a will to do so.

Invest in ME began distribution of the book “Lost Voices from a Hidden Illness” earlier this year. Once delivery began we took the liberty of sending a complimentary copy to your wife, Sarah, who is global patron of the White Ribbon Alliance for Safe Motherhood and co-chair of the High-Level Leadership Group on Maternal Mortality convened by the Global Leadership Network.

ME is more prevalent in women, affecting up to four times as many women as men according to some studies. Many women with ME will never be mothers as they have fallen ill as teenagers and spend decades being bedbound. Many mothers have to watch their children’s suffering for years on end without any help from the health services.

Lost Voices is probably the best book ever about ME which shows the true picture of the effect of ME on suffers and families.

We have received neither acknowledgment of receipt of the book nor any indication that the book has been read.

If only one of your ministers would read Lost Voices then there would be no need for any further debate. The very basic compassionate instinct of most human beings would demand immediate action.

Your government fails its citizens, refuses to take any action, ignores the effort of two and a half thousand people who petition you to help them, looks the other way to the plight of the hundreds thousands of citizens affected by this terrible neurological illness and concentrates on spin and ignorance as the cornerstone of your policy toward ME.

A year ago you gave a speech in which you stated that -

“The NHS of the future will do more than just provide the best technologies to cure: it will also – as our population ages and long-term conditions become more prevalent – be an NHS that emphasises care too.”

“It will not be the NHS of the passive patient – the NHS of the future will be one of patient power, patients engaged and taking greater control over their own health and their healthcare too.”

“With cutting-edge techniques from genetics to stem cell therapy – and life-saving drugs to prevent, alleviate or cure conditions ……”

“So if we are to prevent as much suffering and save as many lives as possible, it is clear that utilising these new technologies must continue to be at the heart of any progressive health policy.”

In the last year Invest in ME are aware of people dying from ME, as has happened over the last decades.

We are aware of a family where the mother suffered from ME and where the pain was so great that she was taken to Switzerland to perform an assisted suicide.

We know of a recent case of one mother who has been charged with assisting her daughter in taking her life after she had suffered from severe ME for almost two decades – the pain being unbearable to endure.

We know of patients in the heart of London who suffer for years from ME and receive absolutely no medical treatment – lost voices with no recourse to help from a government and a healthcare service which provide nothing.

We know only too well of children who lose their teenage years and become isolated and reduced to utter dependency on parents who themselves struggle to find any help from the NHS, from the educational establishment or from ministers.

It is easier for people in the UK with ME to get help to die than it is for them to get help to live – thanks to your government’s policies.

Your government’s health ministers have consistently avoided taking any action, continued to answer the petitions and letters from people with ME and their families by using outdated information, template paragraphs containing multiple inaccuracies and an indifference to the plight of chronically ill people.

The cursory response to a valid plea from people with ME and their families shames your government and gives the lie to the sentiment that you really care for what happens to citizens in this country.

In this letter to you we have only concentrated on healthcare provision. We have not even begun to mention the effect of the policies of your government which force chronically ill people with ME to be denied benefits or to spend all their energy on battling to regain benefits taken away by your government departments.

So what are ME patients and their families to do now having received this appalling response from your office?

Despite no epidemiological study being recommended by your government or insisted upon by the health service we can suspect, from studies performed by responsible researchers, that there are between 120,000 and 240,000 people affected by ME in the UK.

Many of these can be expected to have some family and these, in turn, can be expected to have immediate friends and relatives.

It would be no exaggeration to assume, then, that upwards of two million people will be directly affected by the lack of healthcare provision for people with ME – either as direct sufferers of the illness, direct relations or friends of those affected. This figure could be a very conservative figure.

Although Invest in ME does not hold party political views it is an obvious corollary that two million citizens, or more, make up a substantial number of voters who cannot be ignored and who may decide with their votes what they think of the Labour governments’ policies toward ME over the last decade.

It may be that ME organizations can mobilize enough of a protest to make a difference in the forthcoming election and that would, indeed, provide an irony where, to use your own words, the “future will be one of patient power“.

Before we contemplate that action we would ask that you yourself make an hour or two of your time available and devote it to the cause of people with ME.

We ask you to accept a party of individuals organized by Invest in ME to visit you and explain clearly what is required and how your government’s lack of action is destroying lives – or let us take you to a chronically ill patient with ME so you yourself can see the utterly appalling situation which exists for people in this country who are denied treatments (which exist) due to the ignorance of the healthcare service, government ministers and establishment organizations responsible for deciding on which research is given funding.

Letters, petitions, emails and the deaths of people with ME have not moved your government to act.

Will you now see the desperate need for action, meet with us and let us try one last time to make you understand what is really happening?

Show us that, as Prime Minister, you and your government have not abandoned basic ideals of justice and humanity being directed towards its own citizens.

Time is passing not just for your government – more importantly it is also passing for another generation of sufferers from this illness.

Yours Sincerely,

The Chairman and Trustees of Invest in ME

Invest in ME
Registered UK Charity Nr. 1114035
www.investinme.org

Number 10: Invest in ME Conference Petition: Response

On 6 March, I highlighted a Number 10 e-petition submitted by David Loomes.  The deadline to sign up by was 1 May 2009. The e-petition received 2,486 Signatures.  Any enquiries in relation to this e-petition should be directed to David, the petition organiser.

The response to this e-petition can be read here and below:

http://www.number10.gov.uk/Page19853

Wednesday 1 July 2009  Attend IiME 2009 – epetition response

We received a petition asking:

“We the undersigned petition the Prime Minister to petition for Ministers Of Health, MRC and CMO to attend the INVEST in MEConference 29th May 2009.”

 Details of Petition:

“We the undersigned petition the Prime to send the Minister Of Health, Medical Research Council delegates and the Chief Medical Officer to attend the INVEST in ME Conference 29th May 2009 London. The previous IiME conferences in 2008 attended by presenters and delegates from 13 countries, from Europe, USA, Australia, New Zealand and South Korea demonstrated that “PROVEN BIOLOGICAL MARKERS & TREATMENTS FOR SOME SUB TYPES OF ME/CFS ARE ALREADY THERE!” Now the challenge is for the Chief Medical officer, the Medical Research Council and the Government to take up the challenge laid down by the conference in 2008 and commit to a national strategy of biomedical research into ME, without any conditions or provisions for enforcing the psychosocial model to be in corporated.”

 Read the Government’s response

Thank you for your e-petition. I apologise for the delay in replying. Ministers and the Chief Medical Officer receive a large number of invitations from stakeholders, pressure groups and individuals to attend meetings and events. Regrettably, it is not possible to attend the vast majority of these events. The Medical Research Council is an independent organisation and it would therefore not be appropriate for the Prime Minister to instruct it. More generally, the Government recognises chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) as a debilitating and distressing condition. CFS/ME is a chronic illness and health and social care professionals should manage it as such. The Department of Health funds research for health policy development, clinical and applied health research in the NHS, and the NHS costs incurred in supporting research funded by other bodies such as the research councils and charities. The Department’s research budget for 2009/10 is £896million. Details of individual NHS-based projects, including some concerned with CFS/ME, are on the UK Clinical Research Network Portfolio database at www.nihr.ac.uk. Some of these projects receive external funding from research councils and charities. There have been some recent findings about a genetic basis of CFS/ME that are providing extremely valuable insights into the causes of, and possible therapies for, the condition. Clearly, these are early research findings that at present have no direct relevance to any predictive or diagnostic gene test for these conditions. However, the Department of Health continues to keep such developments under review and there are well-established mechanisms to evaluate new genetic findings and ensure their proper implementation across the NHS.

£13 home-test kit developed for ME (Kenny de Meirleir)

ME agenda site is unable to recommend or give advice on laboratory testing, testing kits, treatments, therapies or management strategies or recommend medical practitioners or therapists. Information published on this site, regardless of authorship or origin, should not be considered a recommendation nor a substitute for seeking medical advice. If individuals require information or advice about a medical condition or have concerns about their health they should consult a qualified medical practitioner.

As a rule, ME agenda does not publish around research, testing or treatments on this site and the following media coverage and press release material are posted under the Category: ME in the Media.

Dr Charles Shepherd, Medical advisor and Trustee of the ME Association, told the Daily Mail:

”This is an interesting scientific observation which needs to be looked at in more detail and verified by independent researchers before we can conclude it is a diagnostic test for this illness. We have a research fund* and we would be interested in testing this hypothesis on other groups of patients.”

Dr Shepherd and Professor Kenny de Meirleir have both been named as members of the Editorial Board of a new journal called “Fatigue” due to launch early 2010. 

*The Ramsay Research Fund is the dedicated research arm of the ME Association.

The ME Association published the following statement on 2 June:

http://www.meassociation.org.uk/content/view/875/161/

Media coverage:

Telegraph  |  1 June 2008  | Liz Hunt

http://www.telegraph.co.uk/health/5407749/ME-Proof-that-it-isnt-all-in-the-mind.html

ME: Proof that it isn’t all in the mind?

Belgian doctors, Professor Kenny De Meirleir and Dr Chris Roelant, have developed a simple test that, they claim, solves the mystery of ‘yuppie flu’…

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Daily Mail  |   29 May 2009

http://www.dailymail.co.uk/health/article-1189291/Scientists-develop-home-testing-kit-ME.html 

Scientists develop home-testing kit for ME

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Telegraph  |  29 May 2009  |  Kate Devlin, Medical Correspondent

http://www.telegraph.co.uk/health/healthnews/5401802/Simple-13-test-could-be-used-to-diagnose-patients-with-ME.html

Simple £13 test ‘could be used to diagnose patients with ME’

“A simple £13 test could be used to diagnose patients with Myalgic encephalopathy (ME), scientists believe, and potentially offer hopes of treatment for many.  The researchers believe that the condition, thought to affect around 250,000 people in Britain, is triggered by an overabundance of certain bacteria in the gut and a build-up of toxins in the body…”

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Slides used in the London Press Conference, can be viewed here: http://bit.ly/15fr3o

Media scientific information, here, on ME agenda (2MB PDF):  Press Conference-KDM-2

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£13 home-test kit developed for ME

Scientists have developed a £13 home-testing kit which they claim will help identify people suffering from myalgic encephalopathy (ME).

The urine test is based on the theory that the illness is strongly linked to certain bacteria and a build up of toxins in the body.

Experts are divided on what exactly causes ME, which was dismissed as “yuppie flu” in the 1980s.

At a conference in London, Professor Kenny de Meirleir, who works at the University of Brussels, discussed his theory.

He and fellow scientists have developed a simple urine test which they say identifies the presence of high levels of the chemical hydrogen sulphate.

This chemical builds up after antibiotic use or exposure to salmonella infection, and can occur when there is too much exposure to mercury, he said.

Prof de Meirleir’s research has shown that around 90% of patients with ME also have an excess of the bacteria enterococcus and streptococcus, which he believes interacts with exposure to metals to produce hydrogen sulphate.

Prof de Meirleir, who treats between 3,000 and 4,000 ME patients a year, said his patients had been shown to excrete high quantities of the metals copper, mercury and nickel, possibly contracted through the environment or food.

Prof de Meirleir said his new test, produced by his company Protea Biopharma and available via its website from Monday, accurately shows whether an ME patient has high levels of hydrogen sulphate. The patient’s urine turns a dark colour when mixed with a chemical agent in the test.

“This is a test for a major cause of ME,” he said.

“Anyone with a positive result should talk about it with their GP and get referred to a specialist.”

Ends

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Ed: Kenny de Meirleir will be presenting at the 4th Invest in ME International ME/CFS Conference in London, today, 29th May. 

Kenny de Meirleir is a member of the editorial board of a new journal controversially titled “Fatigue” which we are told will debut in early 2010. The journal’s Editor, Dr Derek Enlander, has yet to issue a formal statement of clarification setting out the scope and intentions of this proposed publication.  The Editorial Board has been announced as comprising Derek Enlander, Editor (USA), Charles Shepherd (UK), Jonathan Kerr (UK), Dharam Ablashi (USA), Paul Cheney (USA), David Bell (USA) and Kenny de Meirleir (Belgium).

See previous postings:

http://meagenda.wordpress.com/2009/05/21/journal-fatigue-whats-in-a-name-co-cure/

http://meagenda.wordpress.com/2009/05/16/new-journal-fatigue-whats-in-a-name/

http://meagenda.wordpress.com/2009/05/14/more-on-journals-and-the-f-word/

 

Summary: Meeting, MEA Board of Trustees 17 March 2009

Summary of meeting, ME Association Board of Trustees Tuesday, 17 March 2009

This is a summary of key points to emerge from a meeting of The ME Association Board of Trustees that took place at our Head Office in Buckingham on Tuesday 17 March 2009. Informal discussions also took place on a number of issues the night before. Please note that this is a summary of the Board meeting – not the official minutes.

The order of subjects below is not necessarily in the order that they were discussed.

PRESENT

Trustees:

Ewan Dale (ED) – Honorary Treasurer
Mark Douglas (MD)
Neil Riley (NR) – Chairman (by telephone link)
Charles Shepherd (CS) – Honorary Medical Adviser
Barbara Stafford (BS)

Officials:

Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager

Apologies:

Rick Osman (RO) – Vice Chairman

FINANCES

ED updated trustees on the financial situation, including a discussion on the final monthly accounts for the year ending December 2008. Despite the very difficult economic climate for charities it was encouraging to note that income from subscriptions, gift aid, advertising, literature sales and general fundraising for 2008 was slightly up on 2007. Income for general funds was also roughly in line with expenditure.

However, like all charities we are now facing a situation where people are likely to be reducing the amount of money they are able or willing to give to the charity sector. At the same time, demand on our support and information services is increasing, and may well see a further significant increase once the government’s new welfare/benefit reforms start to take effect.

Trustees and staff agreed to continue to maintain very tight control over expenditure and to pursue the best rates of interest on money held in our reserve accounts – where there has been a very dramatic fall in income as a result of the base rate cuts over the past few months.

Number 10: Invest in ME Conference Petition

Number 10 Invest in ME Conference Petition

http://petitions.number10.gov.uk/AttendIiME2009/#detail

We the undersigned petition the Prime to send the Minister Of Health, Medical Research Council delegates and the Chief Medical Officer to attend the INVEST in ME Conference 29th May 2009 London.

The previous IiME conferences in 2008 attended by presenters and delegates from 13 countries, from Europe, USA, Australia, New Zealand and South Korea demonstrated that “PROVEN BIOLOGICAL MARKERS & TREATMENTS FOR SOME SUB TYPES OF ME/CFS ARE ALREADY THERE!”

Now the challenge is for the Chief Medical officer, the Medical Research Council and the Government to take up the challenge laid down by the conference in 2008 and commit to a national strategy of biomedical research into ME, without any conditions or provisions for enforcing the psychosocial model to be incorporated.

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Ed: Please note that ME agenda has no connection with this Number 10 Petition.  All enquiries in connection with the Petition should be directed to the Petition Organiser and no correspondence can be entered into.