Invest in ME Newsletter

March 2008 Nr. 08/03

Welcome to Invest in ME's March newsletter.

IN THIS ISSUE

International ME/CFS Conference News
Conference DVDs
ME or Not ME
Calling London - Survey of Patients
The Invisible Man and ME
"Lost Voices" - the ME Book Project
Parliamentary Questions
ME Petition to the Prime Minister
National Knowledge Week for ME
Professor Basant Puri
Thanks

The International ME/CFS Conference 2008 News

Sub Grouping and Treatments of ME/CFS

Our agenda for the International ME/CFS Conference on 23rd May 2008 is now available here.

Start Time

Activity/Presentation

Speaker

from 08:00

Registration

 

08:55

Welcome

Professor Malcolm Hooper

09:00

Key Note Speech:

TBC

09:15

Case Definitions of ME/CFS – including paediatric case definition

Dr. Leonard Jason

10:15

Gene Expression in ME/CFS: a means of Subtyping

Dr. Jonathan Kerr

10:45

Coffee/Tea Break

 

11:05

Diagnosis and Treatment of ME/CFS - Longitudinal Observations of Cardiac and Antiviral studies

Dr. Martin Lerner

12:05

Autonomic Dysfunction: Identification of aetiologically distinct subject groups within ME/CFS

Dr. Julia Newton

12:35

Lunch

 

13:35

Research on the Role of Chronic Enterovirus Infection in CFS/ME

Dr John Chia

14:35

A GP’s Experiences of Diagnosis and Treatments of ME/CFS

Dr. Irving Spurr

15:05

Coffee/Tea Break

 

15:25

Case Studies of Diagnosis and Treatments for ME/CFS

Dr Jean Monro

15:55

How Sub Grouping will affect research strategies

Dr. Judy Mikovits

16:45

Plenary Session

Professor Malcolm Hooper

17:30

Adjourn

 

 

For the conference this year we have tried to maximise the time given to speakers, rather than just provide snapshots of information. So Dr Chia, Dr. Lerner, Dr Jason and Dr. Mikovits (presenters who are rarely seen in the UK) have been given almost an hour to speak and answer questions (in depth). We could use even more time but are limited to one day.

Additional Speaker

Dr Jean MonroIiME are pleased to welcome Dr. Jean Monro as an additional speaker at our conference. Dr. Monro is the Medical Director of the Breakspear Hospital and is an internationally recognised specialist in environmental medicine.
Dr Monro is a Fellow of the American Academy of Environmental Medicine, a Board Certified US examination. Dr Monro has previously been Medical Advisor to Sanity and Medical Advisor to the Coeliac Association.
In early 2007, Dr Monro was asked to be a witness for the House of Lords' Select Committee on Science and Technology on allergy treatments.

Conference Venue Change
Our original conference plans involved a date in early May (as in previous years). Due to unforeseen circumstances we had to change our plans and move the conference to the end of May and our preferred venue was not available. Recently, however, we were informed that last year's venue, at One Birdcage Walk in Westminster, was available for our 23rd May date and so we have made the decision to move back to Birdcage Walk in Westminster. This is only a few minutes away from the Savoy Place venue and we hope this will not inconvenience people (we have been in contact with all delegates who have booked for the conference).

IiME Conference Sponsor

IiME would like to say a big thank you to IMET who again have contributed to the conference costs this year, as they have done in the past. IMET have attended every IiME conference and we are pleased to welcome back good friends.

Irish people are renowned for their generosity and this has been a big help to enable us to continue hosting the conference.


ME/CFS Support Groups
Many thanks to those individuals and groups who are helping us spread word of the conference to healthcare professionals.

Our Sponsor a GP scheme is attracting a lot of interest from healthcare staff.

Since the last newsletter we have added an a4-poster available here and more details are available here and our conference flyer is available to be downloaded from here.

We welcome delegates from across the world to participate again this year. We hope as many as possible will be able to join us.

Conference DVDs

As in previous years IiME cannot promise we will deliver a DVD of this conference. Our objective is to  provide a platform for the most relevant research and experience of ME/CFS and we have to use our funds to ensure the conference goes ahead before we can commit to funding a DVD.

Dr Byron Hyde Dr Kenny De Meirleir Professor Martin Pall Dr Sarah Myhill Dr Jonathan Kerr

However, the presentations which were given by our speakers at the 2007 and 2006 conferences are still relevant and available in full on the DVDs (click here for details).

For 12 one can see Dr. Byron Hyde, Dr. Vance Spence, Professor Marty Pall, Dr. Dan Peterson, Dr. Kenny De Meirleir, Dr. Sarah Myhill, Dr. Derek Pheby, Dr Abhijit Chaudhuri, Dr Nigel Speight and others.
Our 2006 DVD also has Dr. Bruce Carruthers (principal author of the Canadian Clinical Case Definition), Dr Basant Puri and Jane Colby giving fascinating and moving presentations which are still very valid.

ME or NOT ME

The theme of the International ME/CFS Conference is Sub Grouping and Treatments of ME/CFS. Correct diagnosis is so crucial and obtaining an incorrect diagnosis can be the most expensive element of healthcare - both financially and from a human point of view.

We would like to mention two illnesses which we have heard of recently where the diagnosis of ME/CFS turned out to be incorrect causing years of misdiagnosis and delay of correct treatment.

Fabry Disease is a rare chromosome x linked genetic defect in which the enzyme alpha-galactosidaseA is deficient. It is classed as a neurological illness and affects all bodily systems. It is more common in males than females.

Symptoms may start in childhood and the illness is often misdiagnosed. Symptoms include severe burning pain especially in hands and feet, impaired sweating, exercise intolerance, skin rashes, corneal whirling, gastrointestinal problems, heart problems, kidney problems, nervous system problems and psychological and social issues.

An enzyme assay test which measures the amount of alpha-GAL enzyme activity in the blood can be used to diagnose Fabry Disease.

More details may be found at http://www.fabrycommunity.com/en/Patients/Education/Symptoms.aspx


Hughes syndrome is a relatively new autoimmune disorder with many clinical features affecting more females than males.

It is sometimes called 'sticky blood syndrome'. This is because people with it have an increased tendency to form clots in blood vessels. Any blood vessel can be affected including the veins and the arteries causing a multitude of symptoms including headaches, memory loss, ‘cornbeef’ skin especially around the knees and wrists, limb pain, visual loss, fatigue, aches and pains etc.

Once diagnosis is made the main aim of treatment is to thin the blood.

More details may be found at -

http://www.mayoclinic.com/health/antiphospholipid-syndrome/DS00921/UPDATEAPP=0

 and

http://www.hughes-syndrome.org/

Calling London - Survey of Patients

NHS LONDON March 2008 survey of patients

NHS LONDON, the authority in charge of NHS services in London, is currently conducting a strategic review, to improve three aspects of NHS care in London: patient safety, clinical quality, and the patient experience.

As part of the strategic review, NHS LONDON would like to collect the views of individual members of the public/patients who live in London (or who travel in to access London NHS services). NHS London would like to hear about their individual experiences of care and treatment in the capital.

The survey is being conducted online via a specialist survey website. Therefore, no IP addresses or email details of those who take part in the survey will be visible to the survey administrators. All participants will be anonymous (unless they prefer to specify their contact details).

PatientView (the survey administrator) will email the survey’s headline results to any participant who wishes to receive them (results expected to be available in April 2008).

The final deadline for taking part in the survey is Tuesday, March 18th 2008.

Contact details - the survey administrator, Louise Oatham, on 01547-520-965 (or info@patient-view.com).

Web site link at NHS LONDON Public/Patients

IiME and CMO

Since the CMO published the report on ME in 2002 little has been implemented from the recommendations in that report and our comments on the status of ME from 2007 are still relevant.  Sir Liam Donaldson is in more and more danger of being  perceived as the Invisible Man in the ME world.  

IiME visited the CMO's office last year but, despite platitudes indicating that the case for a more proactive approach to ME would be listened to, little has been done. Yet, if deeds are missing, words remain one item which are still plentiful ...

"I represent the Government, for which I work, the medical profession, which I try to listen to, and the public. My moral principle is that if ever there is a conflict it is the public who wins." - Sir Liam Donaldson

from About the Chief Medical Officer

This exchange between IiME and the CMO's office in the lead up to this year's conference seems to typify the continuing indifference to ME -

Invest in ME to The CMO – An invitation to the conference (our third invitation in three years) is sent to the CMO.
CMO's office to Invest in ME - Sir Liam Donaldson has asked me to pass on his thanks for inviting him to attend the Conference on 23 May.  Unfortunately, on this occasion Sir Liam will be unable to take part due to other commitments.
Invest in ME to CMO - Thank you for your email.
Do you know if Sir Liam will be sending someone in his place from the CMO's office? This is a very important conference for the future treatment of ME and we would like to have somebody representing the CMO at the conference if possible,
"

CMO's office to Invest in ME -

 

Unfortunately, no one is available to attend.

We wonder if any other illness with 250,000 sufferers and costing an estimated 6 billion per year would be ignored in this way by the custodian of healthcare in the UK whose moral principle is to protect the public.

Invest in ME have again written to the CMO asking him to come to the conference. 

The CMO's responsibilities (from the Role of the Chief Medical Officer) include -

"...providing national leadership to the medical profession, helping to explain the health policies of the day and listening to the concerns of the profession and their ideas. In this way I can provide, where necessary, a bridge between the medical profession and the government.
Over the course of a year, the Chief Medical Officer comes into contact with large numbers of doctors through conferences and visits."

"There are constant risks of new and emerging threats to the health of the public arising from infectious diseases or other unforeseen hazards.
I often become involved in trying to resolve such problems, working with ministers to provide the necessary expertise in analysing the situation and taking necessary and appropriate action. It is in this arena that the media role of the Chief Medical Officer becomes prominent. I am well placed to explain the context of the problem, provide advice and reassurance where possible and appropriate, and respond to questions and concerns."

IiME have recently been involved in trying to help friends of a severely ill pwme whose apparent treatment at the hands of her GP seemed to echo that received by Sophia prior to her death. One could hope for a little more involvement from the CMO in resolving these problems which are occurring constantly with regard to ME.

As Emma's response here to Sophia's story shows, the reality is so very different from the official line-

"The disease is a formidable one, but the opposition and suspicion faced by sufferers and their carers is overwhelming.  I'm haunted by the damaging and obtuse comments that have been made over the years by various doctors, and while Sophia's story is tremendous sad and infuriating, I feel a little less alone for having read it. "

We should keep in mind the CMO's comment -


"My moral principle is that if ever there is a conflict it is the public who wins."
- Sir Liam Donaldson 2007

'Lost Voices' - The ME Book Project

IiME’s book and exhibitions-in-hospitals project ‘Lost Voices’ has got off to a flying start and the response has been wonderful. There have been many offers of help and requests to contribute, messages of encouragement and appreciation from the UK and abroad, and whole-hearted support from the 25% Group, TYMES Trust and from Lime Art - which has offered to help with funding for an exhibition of the book work in Manchester and support for other venues.

We are very excited by the way the project is developing and by the quality of the contributions already received. They are intensely moving and reflect the hidden suffering experienced by so many people. The contributions have been written with brave honesty and demonstrate an astonishing vigour, a passionate desire for life and commitment to fighting for a better understanding of this illness. There are over 20 people involved so far -aged 14 to 60 - plus carers and family members, and including a bed bound GP. Some contributions have been received from individuals whose illness is shockingly severe. We believe the book will be a very powerful and accurate tool for demonstrating the reality of severe ME to those who have little conception of what it entails.

It is becoming apparent that carers and families have a crucial role to play in this project, not only by enabling those who are so ill, to speak or write, but by ‘telling it’ from their perspective. As carers we are the connection, the mediators between the world of the healthy and that of the severely ill, and can throw light on scenes that are invisible to others.

One of Iain’s tasks in our team is to use his experience and contacts from working in a university art department to exploit the professional networks open to him. This enabled the exhibitions in hospitals aspect of the project to come about. We will continue to look at ways to ensure that the book and its message reach the widest possible audience.

There is still space for a few more participants, both carers and people with ME. If you are a carer for, or someone with, severe ME and would like to find out more about how to contribute, then please have a look on the IiME website and contact us - click here.

We are extremely grateful to all of you who are in the process of writing contributions, have already done so, or intend to take part in this project. You are making it a success.
Thank you, from the ME book team.

(We hope to show progress and examples from the ME Book Project at the IiME International ME/CFS  Conference in London on 23rd May.)

Parliamentary Questions

The previous meeting of the All Party Parliamentary Group on ME/CFS failed to put Invest in ME's questions to Mrs Ann Keen MP who has responsibility for ME/CFS (click here). We have never received a reply from the chairman of the APPG Mr Des Turner MP. At the APPG meeting some thought Mrs Keen's comments were reassuring in recognising ME as a physical illness. Yet a recent reply from Mrs Keen to a friend of ME (received after the APPG meeting) shows the same pattern of misinformation or misunderstanding as exhibited in the past.

Some interesting points to note came from Mrs. Keen's reply.

Regarding the classification of ME/CFS Mrs Keen writes -

The World Health Organisation (WHO) classifies CFS/ME as a neurological disease, and in the International Classification of Diseases, it is coded G93.3. The government has long recognised the WHO classification of CFS/ME, and this is the definition used in the guideline (the NHS Plus Guidelines which were heavily criticised by many ME charities and organisations)

The manner in which the NHS Plus Guidelines were brought out and their deplorable and fallacious content were an appalling indictment of government misinformation.

Regarding the Gibson Inquiry Mrs Keen writes the following -

I must explain that the Department of Health was not involved in this report, and we have no plans to respond to or implement the report, which has now been overtaken by the recent NICE guidance for the treatment of CFS/ME. The main recommendation of the Gibson report was more funding for research into CFS/ME.

On the PACE trial Mrs Keen writes -

All patients recruited to the PACE trial will receive detailed patient information literature and will sign a consent form to confirm that they understand the full details and implications of taking part in the trial. This trial is supervised by an independent steering committee and data monitoring and ethics committee. There is no question of compulsion.

On research funding Mrs Keen writes -

CFS/ME has been a strategic priority area for the MRC for a number of years, and while not currently funding any research specifically related to the biological effects of CFS/ME, the MRC remains committed to funding scientific research into all aspects of CFS/ME including evaluations of other treatments and studies into the biological basis of the condition.

We can only guess who is advising Mrs Keen on ME/CFS.

Invest in ME have written to Mrs Keen again, repeating our invitation to attend the London conference in the hope that some change in attitude can be made.

ME Petition to the Prime Minister - Falling on Deaf Ears

The response to the ME petition submitted by Konstanze Allsopp to get the Health Service and medical profession to accept the WHO classification of ME/CFS as an organic neurological disorder and not as a psychosocial syndrome has seemingly (see here) failed to produce anything from the UK government other than the static, unscientific and visionless statements for which NICE were so heavily criticised for in their guidelines for ME/CFS.

The response states -

"There is currently very little information about the relative benefits of cognitive behaviour therapy (CBT) and graded exercise treatment and a scientific trial is the only way to find out which is the most effective approach."

Despite the chorus of complaints from ME Support Groups and people with ME and their carers that neither of these therapies are worth the investment in time and money the government refuses to listen.

From a Co-Cure posting about a recent Dutch pilot study (Koolhaas, et al., 2008, Netherlands) comes this extract -

"(the study) reports that only 2% of ME/CFS patients are cured by CBT, while the greatest share (38%) are adversely affected - most reporting substantial deterioration. It is especially notable that employment and education are negatively affected.
This is in sharp contrast to the claims of psychiatrists and the Dutch Health Council that 70% of patients improve. Previous studies have also ignored or denied the negative affects of CBT on ME/CFS patients. The pilot study, recently published in the Dutch Medical Magazine, Medisch Contact, concludes that the previously reported claims of 70% improvement in ME/CFS patients receiving CBT are vastly overstated and misleading.
"

An English summary is contained in the document of the Dutch-language study - see here.

There is a great deal of biomedical evidence regarding ME/CFS but the government does not see fit to invest resources in determining the epidemiology or possible diagnostic markers of ME/CFS. The government determines not to take up the recommendations from the Gibson Inquiry into ME/CFS which suggest heavily funding biomedical research, and giving biomedical research the same level of funding as has been given to a powerful psychiatric lobby who are promoting CBT as a treatment for ME/CFS.

One wonders if it would be acceptable for other illnesses to have no research into the cause, pathogenesis or even establish a standard set of diagnostic criteria.

The hypocrisy within the reply from the Prime Minister's office is underlined when it states -

'It is important that health professionals recognise that people can vary in response to the treatments available and that it is appropriate to review therapy if symptoms appear to worsen as a result'

yet it fails to do anything but treat ME/CFS with a one-size fits all approach.

Well done to Konstanze for initiating this petition and for all of those signing it. What a shame that ministers have failed to treat it with any dignity.

National Knowledge Week for ME

Last year IiME wrote to Sir Muir Gray, Chief Knowledge Officer of the NHS and a lifelong advocate of patient empowerment. We suggested a knowledge week for ME/CFS would be appropriate within ME Awareness Month. IiME have followed this up this year and have again suggested that a Knowledge Week on ME could be created at the end of May, culminating in the IiME International ME/CFS  Conference.

“In the 21st century, knowledge is the key element to improving health. In the same way that people need clean, clear water, they have a right to clean, clear knowledge” - Sir Muir Gray

IiME's aim is to educate regarding ME and National ME Knowledge Week would be a sensible and timely event.

More details about Sir Muir and his department may be found at - http://www.nhs.uk/News/Pages/SirMuirGray'sBiography.aspx

Professor Basant Puri

We recently visited Professor Basant Puri at his Hammersmith Hospital base whilst participating in his current research project (Non-invasive structural and functional neuroimaging in ME/CFS).

The purpose of Professor Puri's study is to understand what happens in ME-related disorders. A medical examination is performed, tissue samples are taken (a small blood sample and a breath sample) and a niacin skin test is made. An MRI-scan is also performed. The machine used for this was more advanced than is usually used in hospitals.

We were impressed by Professor Puri's manner and dedication (he was working at the weekend when we visited). His work should be producing data over the next few years and we have provisionally invited Professor Puri to present at our 2009 conference. We hope also to welcome Professor Puri to the conference on 23rd May.

We welcome this type of research as it is producing objective scientific data which, as with the existing biomedical data, should result in a clear direction being provided by the government to tackle ME.

Thanks

IiME would like to thank our friends and supporters for continuing to donate. We have to respect their privacy but we would just like to say a thank you for your help.

Many thanks to Derryan and the Mid and West Wales ME Group for their donation following a collection day. Thanks to all.

Best wishes to all

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