Invest in ME Newsletter

June/July 2008 Nr. 08/06

Welcome to Invest in ME's June/July 2008 newsletter.

IN THIS ISSUE

International ME/CFS Conference Success
2008 Conference DVD
Whittemore-Peterson Institute
Accountability
Thyroid paper from Hyde
"Lost Voices" - the ME Book Project update
Google ME Awareness Day

The International ME/CFS Conference 2008
Sub Grouping and Treatments of ME/CFS

TREATMENTS ARE AVAILABLE

The 3rd IiME International ME/CFS Conference in London was attended by delegates from thirteen countries and clearly showed why a strategy of biomedical research into ME/CFS using sub grouping  is the correct way forward in dealing with this illness.

After years of being presented with statements from government ministers and departments, MRC and others involved in healthcare provision about the limited knowledge regarding ME and the lack of treatments for the illness the delegates at the IiME conference left the conference asking why nothing has been, or is being done, in the UK to treat patients with ME when the speakers at the conference presented evidence of effective treatments which were curing or substantially improving some patients' health and had been doing so for years.

IiME publish a review of the 3rd IiME International ME/CFS Conference in London - click here.

The question which should be directed at the Medical Research Council, the Chief Medical Officer and the Secretary of State for Health is "why are you doing nothing?".

We shall continue to pose this question as we continue with the post-conference initiatives.

We would like to thank all of our presenters who did such a wonderful job in conveying the need for Sub Grouping and described the treatments which are available. We would also like to thank those who helped us with the conference costs. We had a very kind and generous donation from one source who paid for the costs of one of our presenter's travels to the UK and we had donations from our wonderful supporters which were put toward the costs of the conference. This has helped tremendously in easing the financial burden on the trustees at IiME. Many thanks again for all of your support.

2008 Conference DVD

 

The conference DVD is in the process of being produced and will be available in early July. We thank everyone for the support shown to us in requesting that we produce the DVD again this year. The 2008 DVD will have all of the presentations plus plenary and interview sessions with Dr Leonard Jason, Dr John Chia, Dr Martin Lerner, Dr Judy Mikovits and Dr Irving Spurr.

The conference DVD may be ordered via this link.

The Whittemore-Peterson Institute

At the conference the Chief Medical Officer's and the Medical Research Council's representatives heard the offer made by the Whittemore-Peterson Institute for the CMO, the MRC Chief Executive, the Secretary of State for Health and Mrs Ann Keen MP to visit the WPI in Nevada in the next 6-8 months. Invest in ME have followed up this offer by sending the invitations via recorded delivery to the above mentioned persons.

We have to say that, over a month after receiving the invitations, only the CMO's office has acknowledged receipt. Neither the Secretary of State for Health, nor minister responsible for ME Mrs. Anne Keen, nor the  head of the MRC, Sir Leszec Boryziewich, have responded to this invitation.

It is almost standard practice to view the continued indifference of government ministers to the plight of its citizens despite our many attempts at engagement. We are aware of the systemic bias of the MRC - something we have continually tried to change by offering to form a party of representatives from the ME community to visit the MRC to discuss changes required, and by offering them participation in our annual biomedical research conferences. We believe these efforts are having some effect, however indirectly, though our opposition to endorsing any MRC plan for collaboration with the vested interests of the psychiatric lobby may mean that the MRC will exclude us (and others taking a similar stand) from any patient group discussions.

We believe that the WPI is the model which needs to be established in the UK and we will do anything to facilitate the visits to Nevada of these public servants. We have also set up a page on our web site with a link [see here] to the WPI where one can make donations. We believe this is currently the best way forward - to show support for the WPI and its development.

We will follow up our invitation requests to the MRC, CMO and DoH and we invite everyone to do the same. The offer is easily acceptable  and could lead to real value for the government, MRC and CMO who seemingly fail to display any real vision in investigating treatments or a cure for ME.

Accountability

At this time, after so long being in denial, or even willfully ignoring the evidence and the situation, these officials in the government, Medical Research Council, official organisations and others involved in deliberating on the treatment of people with ME, all need to be called to account for their actions, or lack of.

The delay in producing June's newsletter has been due, in part, to IiME having recently been involved with several people with ME whose situations are appalling and need attention. These are stories where people are denied benefits because they have a diagnosis of ME; denied access to any sensible or proper treatments because their GP does not "believe" in ME; forced to accept unwanted referrals of a child to a distant "ME establishment" because their PCT has used coercion with the threat of the child being taken away and made a ward of court; or have actually been sectioned by a GP whose sense of morality is inferior only to their knowledge of ME.

And there is even worse which we are not at liberty to mention here. All of this is occurring on the sixtieth anniversary of the NHS being created.

After organising and hosting a biomedical research conference which has clearly shown that sub grouping of ME is necessary and that effective treatments are already available for some then these cases clearly reinforce our view that compromise is not an option and accountability is now the watchword for these officials who are not treating ME with the urgency is has always required.

Accountability - The CMO - A Time for Change

The Chief Medical Officer, Sir Liam Donaldson, declined the invitation to visit the Whittemore-Peterson Institute in Nevada, USA, stating that he has not time in his diary. He has also declined the invitation to attend the opening of the WPI in 2010 by stating that it is too far in the future. IiME have responded by requesting the next available free date in Sir Liam's calendar so that the WPI invitation may then be re-arranged. We have had no reply as yet.

"A small but important part of my work involves international health matters. This involves some overseas meetings, particularly under the auspices of the World Health Organisation, and receiving visitors from other countries."

- from the Role of the Chief Medical Officer

One would think that an invitation to visit the model centre for researching ME would be of interest to a nation's Chief Medical Officer when that illness is responsible for possibly a quarter of a million sick people, and probably affects several million family members who live with the consequences of the illness on children, wives, husbands, relatives etc.

What kind of things do you do?
"Almost all days are long and packed with many different types of activity. These can range from meetings to discuss a new policy for the NHS, to reviewing health protection plans, to listening to ideas for improving services."

- from the Role of the Chief Medical Officer

But no. The Invisible Man of the healthcare system seems not to concern himself with the plight of pwme. He seems not to be interested in improving services or listening to ideas regarding ME.

"Some of my day will be taken up with visits or speaking at conferences."

- from the Role of the Chief Medical Officer

The CMO has declined all invitations to attend or speak at the IiME International ME/CFS Conferences (although he finally sent a representative to this year's conference for less than a half day - yet nothing has materialised from that representation).

It is worth repeating our March newsletter comments regarding the responsibilities of the CMO -

"...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
"

- from the Role of the Chief Medical Officer

We see no national leadership being displayed regarding ME.

Sir Liam Donaldson is not listening to researchers who can demonstrate the physical basis of this illness and the treatments which might save lives.

We attempted to get the CMO to make ME a notifiable illness in schools, especially as ME is the leading cause of long term absence from school for students. But no action was taken.

"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."

- from the Role of the Chief Medical Officer

We hear nothing from the CMO regarding the status of ME since his 2002 working group published recommendations - none of which have been implemented.

"People hear about our policies when they are launched and perhaps hear nothing more about them for a long time. When progress is reported, they then do not have a clear picture of the original policy that a particular progress report relates to. In this section I want people to have access to information about the progress of some of our important policies. I want them to be aware of the work that is being carried out on their behalf." Sir Liam Donaldson, CMO."

- from Progress on Policy - http://tinyurl.com/69e3a2

When looking at the CMO's Progress on Policy there is nothing about ME!

People with ME and their families have been subjected to inequality throughout their experience of ME, from being diagnosed to being treated or managed or when having benefits denied by the government's outsourced disability and benefits services. Sir Liam's statement on inequalities -

"Some small areas of the country have levels of health equivalent to the national average in the 1950s. It's those deep-seated differences in the health experience of people in the most deprived parts of the country that we need to do something about."

- from an Interview with Sir Liam Donaldson - http://tinyurl.com/5kpuaz

Yet still people with ME and their families/carers must waste unnecessary and inordinate amounts of energy and time battling against an establishment view of ME which belongs to the 1950s.

"I believe an institution that ignores its problems will continue to make mistakes. Learning from the bad experience of one patient might save the life of the next,.."

- from an Interview with Sir Liam Donaldson - http://tinyurl.com/5kpuaz

IiME recently visited one of those severely affected people that we mentioned above - a lady who had contacted us for help. We'll call her Sheila. We were devastated by what confronted us - this is part of the report back - 

"Sheila is extremely ill and very frail with hardly any strength. Her flat is in a terrible state because of her ill health, rubbish and papers piled up everywhere.
She is sleeping in the living room on a low bed, which she has covered in a black bin liner as she is often incontinent and sometimes can't get to the commode.
The commode is in the living room and can only be emptied when somebody does it for her.

One of the bedrooms leads out on to a sort of veranda which is open access to all residents, there is no lock on this door so anyone can walk in.

Her arms are very weak (and one probably is damaged permanently).
We were horrified to see that Sheila was unable to lift the food to her mouth, she had to feed herself the way an animal has to. She is very thin and under nourished.

Sheila has been on her own for years."
 

Sheila no longer receives any medical help.

The performance of Chief Medical Officer of the UK has been ineffective, lacking in leadership and unwilling to engage with ME patients or their carers who are crying out for change.

Unless some change becomes evident, unless some action is soon taken, unless the Chief Medical Officer of this country decides to take definitive action to end this appalling situation regarding ME, then IiME feel that the Chief Medical Officer should resign and be replaced by somebody who is genuinely interested in improving the lives of people with ME and their families.

We  cannot be sure who would replace Sir Liam. We can only think that now must be the time to end this constant battle with the establishment on how ME is to be treated and researched. We see no sign of this with the present incumbent of the office of CMO.

Now is a time for vision and leadership.  It is time for a change.

In parliament

In a recent exchange in the House of Lords the Countess of Mar asked Her Majesty's Government:

"Whether the current NHS review will include consideration of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) as a long-term neurological condition."

The Parliamentary Under-Secretary of State, Department of Health (Lord Darzi of Denham):

"My Lords, the Government recognise that CFS/ME is a poorly understood condition that can be very distressing to patients, their families and carers. The long-term conditions pathway is one of the care pathways that strategic health authorities are examining as part of the NHS next stage review. The review, which is being led by local multidisciplinary working groups, will increase awareness and ensure better care for people with CFS/ME and will help to support local delivery of the NSF for long-term neurological conditions."

The Countess of Mar:

"My Lords, I thank the Minister for that reply. Does he appreciate that, despite the fact that it has been 40 years since the World Health Organisation recognised ME as a neurological disease and 20 years since the Department of Health did so, adults are still sectioned or deemed as lacking in capacity and children whose parents are blamed for their illness are put on the at-risk register or are made wards of court, with people from both these groups forcibly put into mental hospitals? This has been described to me as abuse by professionals. What has been the outcome of the CMO's 2002 recommendations on the 8.5 million supposedly spent on CFS/ME, which has apparently come to nothing, and what will happen in the future?"

Lord Darzi of Denham:

"My Lords, the Government accept the World Health Organisation's classification of CFS/ME as a neurological condition of an unknown cause. My ministerial colleague Ann Keen reaffirmed that position at the meeting of the All-Party Parliamentary Group on ME in January of this year. Subsequent to the CMO's report, the Government allocated funding of 8.5 million for two years, 2004–05 and 2005–06, to set up specialist CFS/ME services where none existed previously. These centres, of which there are 13 across the country, would improve services for those with CFS/ME."

Baroness Tonge:

"My Lords, when I was a student, I had a professor who, when asked the cause of a very difficult disease, would usually reply, "Nobody knows, tiddly-pom". I suspect that ME falls into the "nobody knows" category. It is welcome news that pathways are being set up to look at this condition and to decide what is to be done in the health service, but how long will it be before the condition is taken seriously and protocols are in place to deal with the very real consequences for patients of this disease?"

Lord Darzi of Denham:

"My Lords, I thank the noble Baroness for acknowledging that for many years there has been a heated debate about CFS/ME among researchers, practitioners and patients. In fact, few illnesses have been discussed so extensively. The underlying issue is whether more research and development should be undertaken in this field not just on the symptomatology but on a diagnostic test so that we can at least plan different treatment protocols. In August 2007, NICE looked at the evidence relating to treatment protocols and recommended cognitive behavioural therapy and graded exercise therapy, as there was some evidence to support their suitability in the treatment of this condition."

Lord Swinfen:

"My Lords, so far as I could hear, the Minister failed to respond to the noble Countess's point on patients with this disease being sectioned and children being put into care as a result. Would he be good enough to do so now?"

Lord Darzi of Denham:

"My Lords, I have acknowledged that CFS/ME is a neurological condition, but I am not aware of the circumstances in which associated illnesses might require sectioning. The noble Countess wrote to me about one specific case and I shall respond in relation to that."

Baroness Howe of Idlicote:

"My Lords, can the Minister explain to the House why the Royal College of General Practitioners continues to insist on categorising CFS as a mental illness?"

Lord Darzi of Denham:

"My Lords, the Government have made it clear that they consider that CFS/ME should be classified as a neurological condition. It is for professional bodies to look at the evidence base and I will encourage the Royal College of General Practitioners to look at the WHO classification, which, as I said earlier, is that it is a neurological rather than a mental condition."

Parallel Worlds - NICE Reviewed

The MRC representative at the IiME conference confirmed that Professor Stephen Holgate is to act as chair of a new multi-disciplinary panel set up by the MRC which will focus on the subtypes and aetiology of ME/CFS as part of a plan to fertilise cross-disciplinary research activity in this field.

IiME stated in explicit terms to the MRC representative that we were not hopeful of where this would lead, especially as we the invitations to  Professor Holgate to attend the IiME conference, extended both personally and via email, resulted in no reply. We wondered how such a multi-disciplinary committee is to be formed if the most up to date biomedical research on display in the capital of this country is ignored.

The conference theme of sub-grouping and treatments clearly showed what is possible and where the future direction should lie. Mixing different disciplines to win research money from the MRC is a lost cause if it collaborates with organisations and individuals who view ME as a behavioural illness and will do nothing to help people with ME.

It will be interesting to see how the MRC respond now to the need for sub grouping and continuing calls for more funding for biomedical research made by IiME and others.

Nowhere is the falsehood of mixing psychiatric approaches toward ME more clearly shown than in the unsatisfactory NICE guidelines - a document which took two years to create and added little to help healthcare staff dealing with ME, patients or their families. Instead it presented its predetermined view that CBT and Graded Exercise Therapy were the main treatments.

The IiME International ME/CFS Conference 2008 has completely destroyed that view - showing as it does how effective treatments have been available for a sub set of patients for many years and how the most effective way forward is to research these sub groups.

The fact that NICE ignored any biomedical evidence showing these treatments has invalidated those responsible for the delivery of the NICE Guidelines for ME.

It is entirely appropriate that NICE were in court on 17th June, in London, attempting to rebut requests from patients for a Judicial Review of the NICE guidelines. The case against NICE was brought by Doug Fraser and Kevin Short and we applaud their stand in winning this first battle against NICE.

NICE will now be brought before a Judicial Review in the autumn.

This is not new territory for NICE. Indeed, the whole organisation might well warrant a review of its structure, its remit and its record of performance.

Dr. Byron Hyde and Thyroid in ME
 

In our January 2007 newsletter we mentioned that Byron Hyde would be talking of the prevalence of thyroid malignancies in pwme at the IiME 2007 conference. We stated that Dr. Hyde was one of the handful of world physicians with such a long experience of examining only ME, CFS and fibromyalgia patients and Dr Hyde's presentation is available on our 2007 conference DVD.

Dr Hyde's paper on this was published in October 2007 and can be seen here -  http://www.alasbimnjournal.cl/alasbimn/index.php?option=com_content&task=view&id=136&Itemid=94

' Lost Voices ' - The ME Book Project

 

Invest in ME’s Book Project – ‘ Lost Voices’ – has been vigorously taking shape over the last few months. There is now a good body of pages made up from wonderful contributions from people whose honesty, courage and determination are extremely  moving. Not only were pages on show at the Conference but it was an opportunity for Dr Leonard Jason to see the work. We are very honoured that Dr Leonard Jason has agreed to write the foreword to the ME Book Project. He was both impressed and very interested in it and says he is honoured to have been invited to write the foreword, and we are absolutely delighted that he is prepared to help in this way.

Dr Jason's knowledge and experience makes his unique a position to make a real difference in terms of understanding the background to the situation we find ourselves in.  He also pointed out that the project is actually a piece of research. We didn’t realise the full significance of this until later, but it does mean that the book and the ‘lost voices’ represented in it become part of the pool of material available to other researchers to build on. Dr Jason particularly asks to be able to show it to his research students. It shifts the ‘being heard’ for our ‘lost voices’ to quite another level.

Dr Chia was also extremely interested in the project and when invited he also readily agreed to write a contribution. This will be a personal response to the material in the book in the light of his experience of his son developing  ME/CFS and the amazing research he, his wife and son have so passionately carried out. He has demonstrated the importance of enteroviruses in causing this illness and has developed treatments that resulted in his son’s recovery.

The book will not only be a very vivid description and evocation of the impact that ME has on individuals and family lives, but will also give an accurate and comprehensive context within which to understand a situation that results in the neglect and even denigration of such prolonged and serious physical illness. It will demonstrate the urgent need for further biomedical research and treatments in this country.

If you too would like to help - to take part in this project and have your voice heard - if you care for someone, whether an adult or child, with severe ME - or are someone with severe ME – and live in the UK - then please let us know as soon as possible by emailing ME Book Project or ring and leave a message on - 0117 9733231.

The Lost Voices project is grateful for the help and encouragement it has received from other organisations and groups (such as the 25% Group, TYMES Trust, MERUK, AYME Grads, and LIMEart).

To enquire further and/or to participate in the project please contact IiME - click here.

The aims of the book and exhibition are - 
 

  • To provide an opportunity for people who are usually invisible and unheard to speak for themselves, so that their situation can be seen and understood more clearly.
  • To show evidence of the devastating impact this physical disease has on individuals and their carers and families.
  • To bring to more public notice the plight of ME sufferers.
  • To help change a widespread lack of comprehension based on general misinformation, vague definitions, guessed numbers and statistics, to the development of empathy and concern for those who are so ill.
  • To educate the medical profession, the public and others such as wider family.
  • To encourage a sense of community among ME sufferers and those supporting them.

Google ME Day

Was our attempt to get Google interested in ME by requesting a Google-Doodle - for ME Awareness Day (12th May) - recognised by Google?
Well, Florence Nightingale (a well-known ME sufferer and symbol of the Nightingale Foundation) was mentioned and appeared as shown below

It's about as near as we probably could get.

Best wishes to all

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