Invest in ME Newsletter

March 2009 Nr. 09/03

Welcome to Invest in ME's March 2009 newsletter.


International ME/CFS Conference News
Pre-conference presentation - CDC Influence
Conference DVDs
"Lost Voices" - International ME Awareness Month
"Lost Voices" - The Book
Human Rights
New Scientist
ME Story
European ME Alliance

The International ME/CFS Conference 2009 News

Management, Treatments and the Latest Advances in Research into ME/CFS

The international ME/CFS Conference on 29th May promises to be the best attended so far.

With twenty places reserved for medical students as part of the Invest in ME Biomedical Research Fund and bookings up on this time last year early booking is advisable.


The conference has shown the increasing interest in hearing the latest biomedical research and treatments for ME.       

Already thirteen countries are represented at the conference and the opportunities for networking amongst healthcare professionals and patient groups are unequalled.


The conference will be showing new research such as that on cytokines from the Whittemore-Peterson Institute where Dr Judy Mikovits and her colleagues have developed a diagnostic blood test which measures cytokines and chemokines that can be used to confirm a diagnosis of ME.

Other research is confirming the data from the IiME 2008 conference - Sub Grouping and Treatments of ME - with research projects demonstrating the fact that treating a subset of people with ME with anti-viral drugs can greatly reduce symptoms and give people their lives back.


In Norway there has been recent publicity of bedbound patients being investigated and subsequently treated by Professor Kenny De Meirleir. Professor De Meirleir's investigations are uncovering various reasons for these patients' illness and some patients are already reporting remarkable improvement in their condition. Professor De Meirleir will be presenting his research and results at the conference.


The complications of long standing ME is poorly understood and rarely discussed or even researched. An epidemiological study of this nature is something which needs to be performed and, again, we look to the WPI for leadership here. We know that Annette Whittemore is asking the questions such as how many patients experience neurological problems such as seizures, or develop MS, heart disease, gastrointestional disease, (Crohn's) etc, osteoporosis, and/or cancer?

The WPI has a cohort that have developed mantel cell lymphoma, and many more who have developed an immune marker prevalent in lymphoma. The WPI may well have data ready for publication by May. We hope also to learn of cytokine (inflammatory) panel and immune profiling studies to be completed by May.

Along with the WPI we feel that it is time to increase awareness of these patients' level of disability and suffering to challenge those who characterise ME as benign. 

Many thanks to those individuals and groups who are helping us spread word of the conference to healthcare professionals. The Sponsor a GP scheme is still available for healthcare staff and local ME groups to work together.

Since the last newsletter we have added an a4-poster available here as well as our conference flyer available here.

Conference News - Professor Basant Puri
We are pleased to add Professor Basant Puri to our line-up for the conference. Professor Puri was a speaker at our first ever international conference and was on our intended list of speakers early on. We are glad that he is able to present for the first time details of his latest research at the conference.

Our agenda for the International ME/CFS Conference on 29th May 2009 is now available - see here.

Hillary Johnson Pre-conference Presentation Dinner - 28th May

We would like to remind everyone of the pre-conference presentation on 28th May with Hillary Johnson, author of Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic - see here]. There are still some tickets available for this event. The evening will begin with Hillary discussing the role of the US Centre for Disease Control (CDC) and how its influence has affected the way ME/CFS has been perceived, not just in America but around the world.

Hillary will also have copies Osler's Web with her and all of the conference presenters are invited - please see here for details.

Dr Byron Hyde once said at one of our previous conferences that, if he were asked what he needed for resolving the problem of ME that he would include a lawyer and a historian. For those interested in the history behind the current situation with ME and why there is so much politicisation around ME and why lives continue to be lost to this illness today then this presentation is a unique opportunity to learn from somebody who has been through all of the politics since the Incline epidemic in the eighties.

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 limited funds to ensure the conference goes ahead before we can commit to funding a DVD.

We'll do our best. Meanwhile, we should mention that the presentations which were given at the 2008, 2007 and 2006 conferences are still relevant and available in full on the DVDs (click here for details).


Another conference comes and with it come the familiar declines to attend by the Secretary of State for Health and his sub-ministers, the head of the Medical Research Council and by the Chief Medical Officer

In June 2008 the IiME newsletter (see here) documented the lack of accountability exhibited by those officials entrusted with the healthcare of people with ME and their families.

This lack of accountability continues. We are disappointed that these public servants have again declined to attend the premiere conference on ME in Europe. However, it is not because of these refusals by these individuals to have their respective organisations and departments represented at the conference which makes us disappointed. It is the continued indifference and lack of accountability being shown by the government, the CMO and the MRC to the plight of people with ME and their families.

Whilst it is possible to have doctors, patients and carers travelling to the Invest in ME conference from all over Europe and as far afield as Australia, New Zealand and North America it seems impossible to get the CMO, the Minister for Health or anyone from the MRC - despite some of them only having a 200 metre walk to the conference venue in Westminster.

We invite everyone to write to the respective departments and ministers to state their views as to why they should be at the conference, to listen to the latest biomedical research on ME.

"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 Chief Medical Officer

from About the Chief Medical Officer


Dave Loomes has made this even easier. Dave has set up a petition  calling for these public servants to be present at the conference in May.

The petition reads -

        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.

See the petition here

The petition has already reached over 800 signatures so please add your name to support us.

Dave's idea has also generated another idea -

Lost Voices -International ME Awareness Month 2009

Our conference is intended to help focus more attention on the severely affected people with ME.

What better way to raise awareness during ME Awareness Month than by highlighting the plight and saluting the resilience of these Lost Voices. To accompany the book we intend to use the title of the book to herald ME Awareness Month with an appeal to hear the people who are often neglected - from healthcare, from research trials and from society.

Lost Voices - International ME Awareness Month 2009               

Dave Loome's petition has generated the idea of raising more petitions during ME Awareness Month regarding ME. The idea is sound.

Many aren't able to attend events and signing a multitude of responsible petitions relating to ME will provide a way of changing views and demonstrate the need for action by those officials who do nothing.

Another idea is to sponsor a Lost Voices book during ME Awareness Month and having it delivered to GPs, healthcare staff or educational or government staff, with a message - see here.

Any further ideas please send to us.

Lost Voices - The Book
Although there aren't many groups or national, subscriber-based charities who have ordered the Lost Voices book, it has, nevertheless, been distributed to many in the UK, with some taking many orders and sharing the cost of distributing them to others.
We are pleased that three libraries and two PCTs have also ordered Lost Voices.
Lost Voices has now been distributed to fifteen countries.

Medical libraries
We have always believed that better education is the key to improving the situation and the hopes for the future for people with ME.

Stacey Lord has pre-empted our plan to make the book more widely available to the medical libraries around the country. Stacey has contacted many people and raised enough money to send the books to most of the medical libraries in UK. Invest in ME will pay for the others to receive a copy. We hope this will be able to directly influence healthcare staff.
There are 37 medical libraries and IiME will be sending copies to the others so that each library has at least one copy



The verdict from the Judicial review into the NICE guidelines for ME returned, predictably, in favour of NICE. Our press release indicated our views on this - see here.

The ME patient community are understandably disappointed that NICE have been allowed to continue with their guidelines which will neither benefit healthcare staff dealing with ME and certainly not patients. Yet out of this comes hope. The actions of two individuals, severely affected ME patients, succeeding in bringing this action against this establishment machine has shown that ME patients are on the way to winning this battle for proper recognition, funding and treatments for this illness. This will not be the end. The science which is providing the indisputable proof the organic basis for ME (based in WHO ICD-10 G93.3 classification) will continue and we will see breakthroughs. Healthcare staff are coming round to the truth about this illness. Patients and patient groups are now armed with better education to fight the ignorance and prejudice which has been allowed to build up over the years.

NICE's press release after the verdict was tellingly informative of their true nature and completely lacking in any awareness of the impact that their  establishment juggernaught machine has had on two chronically-ill patients and hundreds of thousands of patients and carers affected by this verdict.

It is worthwhile stressing the fact that none of the work mentioned above regarding treatments being found for ME would be performed if it were left to NICE - which offers no treatments but only management base on flawed research and ineffectual or dangerous therapies.

We defy NICE and those career-psychiatrists and establishment organisations who have manipulated the truth about ME who characterise ME as a benign illness which can be cured by talking to it. The conference will focus more on these issues.

Human Rights
As NICE closes one door another possibly opens.
3 February 2009 The Equality and Human Rights Commission today welcomed the Government's plans to empower disabled UK citizens to exercise their rights under the UN Convention on the Rights of Persons with Disabilities, which the Government has pledged to ratify by Spring 2009. The Convention reaffirms that disabled people have - and should be able to enjoy - their human rights on an equal basis with non-disabled people and sets out the steps governments are expected to take to make these rights a reality. Other human rights treaties, such as conventions on the rights of children and women, have had a major effect in addressing human rights violations around the world. In a written statement this morning, the Minister for Disabled People Jonathan Shaw MP announced the Government's intent to sign the UN Disability Convention's 'Optional Protocol'. 
Once ratified, the protocol will allow individuals or groups of individuals to bring petitions to the UN Committee if they believe that their Convention rights have been breached.  This step will also give the relevant UN Committee authority to undertake inquiries, when reliable information is received into allegations of grave or systematic violations of Convention rights. Ratification of an Optional Protocol is technically a first for the UK in relation to an international human rights treaty.

demonstrating that the government and establishment policies regarding chronically-ill, disabled people are not at all coordinated.

New Scientist
The responses to a recent article by New Scientist which publicises the views of Professor Simon Wessely show how well informed and articulate the ME patient community is. In response to Wessely's comments in the article the New Scientist web site response page has been inundated with informative views and reasoned debate which so easily destroy the content of the New Scientist article. Click here to view the article and the accompanying responses. It is almost alarming to see how easy it has been to pick apart the "think themselves sick" advocates of ME. Those portraying ME as a somatoform illness are so effortlessly beaten by science, published evidence and, indeed, logic.
Bearing in mind the previous article on human rights we wonder how the current set of professors and doctors who treat ME as a behavioural illness will fair in the future where patients, who have been misdiagnosed or diagnosed with ME but treated with CBT/GET, will possibly be able to seek compensation. That day may be nearer than some think.
And it cannot come too soon for Milton Keynes NHS. Their Policy Statement 130 is typical of the ignorance embedded in the NHS and allowed to fester by some organisations and the DoH.
The South Central Priorities Committees have reviewed the evidence for
interventions in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and in line with NICE Guidance consider that the evidence of clinical and cost effectiveness for cognitive behavioural therapy (CBT) and graded exercise therapy (GET) is sufficient to recommend that PCTs should commission either or both therapies within their local pathways for CFS/ME.

Where CBT and/or GET are not currently commissioned, they are recommended as a service development for future PCT commissioning.

All other interventions for CFS/ME and the provision of any intervention on an
in-patient or residential basis are considered to be a LOW PRIORITY due to lack of evidence of clinical and cost effectiveness.

CFS/ME comprises a range of symptoms including fatigue, headache, sleep
disturbance, difficulty in concentration and muscle pain. An individual's symptoms may vary in severity and there is variation between patients. Although many patients improve over time, others do not.

The cause of CFS/ME is unknown.

Many different interventions for CFS/ME have been investigated in clinical trials of varying quality. 

There is increasing evidence from good quality trials to support CBT and/or GET
in the management of CFS/ME.

CBT with or without GET is more effective than standard medical care and does not appear to be more expensive.

There is evidence for effectiveness in both adults and children.

There is currently insufficient evidence to support any other intervention in
terms of clinical or cost effectiveness.

This includes immunological treatments, anti-viral therapy, pharmacological
treatments, dietary supplements, complementary or alternative medicine,
multi-treatment regimes, buddy-mentor schemes, group therapy and `low sugar low yeast' diets.

There is currently no evidence relating to patients with severe CFS/ME (who are house or bed bound)'.

There is currently no evidence to support the use of in-patient or residential
settings to deliver effective interventions for CFS/ME.

There is currently no evidence to suggest that any group or sub-group of patients with CFS/ME will benefit particularly from any specific intervention or that patients who have failed to improve on one intervention may do better on another.

This demonstrates how dangerous the situation is for people with ME and why so little progress is being made to help patients. The legacy of the NICE guidelines will be to leave this ignorance in place for years to come. A letter is on its way to Milton Keynes NHS.
ME Story
"If you are to be believed, and your answers truthful, then you have the mental age of a senile 71 year old, and I should section you immediately! Now if you would truthfully like to tell me what personnel experience led to your M.E.  then I might be able to help you! What devastating event led to this mental problem, what made you so depressed?"

See more of Debbie's story - click here



Cheney seminar to include stem-cell therapy results on two patients

Recent news that President Obama is to allow stem-cell research to resume brings us to the implications for ME. From the CFS/FM Support Group of Dallas - Fort Worth there has been news of Dr. Paul Cheney's protocol for treating ME with stem cell therapy.
The first of two CFS patients have received a series of umbilical cord stem cell transfusions over the first ten days of February, and the pre and post testing done before and after the stem cell transfusions shows significant, dramatic improvement. The stem cells are known to circulate and continue the healing process for up to six months.

Results are not yet conclusive to define the final outcome of the stem cell transfusions, yet it is reported that initial results are exciting.

Dr Paul Cheney will be speaking on Saturday, April 25th at the Fairfax Board Auditorium of the Government Centre in Fairfax, VA (just outside Washington, DC, east of Dulles Airport).

The European ME Alliance

Things may have seemed quiet recently after the European ME Alliance was formed last year (see November's newsletter and press release). But work is progressing and the group members will be meeting at the International ME/CFS Conference in London in May. Expect more news over the next months as this European initiative gathers pace. (

Best wishes to all


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