Invest in ME - September 2008 Newsletter

NICE, Norway and the MRC

When the dust has settled from our international conferences in London in past years it is often been easy for things to return to a normality comprising of letter-writing, notice board postings and other activities which fit into a familiar but necessary routine for patients, advocates, families.

However, we believe the Sub Grouping and Treatments for ME/CFS conference has helped change the way we campaign and we have to continue to highlight the fact that sub groups of ME/CFS have been identified and must be used for future research. The differentiation of ME/CFS from the rag-bag of varying conditions which have been coalesced into the broad catch-all of chronic fatigue needs to be made.

NICE are being taken to a Judicial Review in the autumn - an action brought about by ME patients.

As we approach that date when NICE are formally brought to account for their mediocre effort in creating guidelines for ME/CFS then we should keep in mind that treatments are available for some sub groups of ME/CFS - that is fact! An organisation such as NICE, which is only interested in saving money at the expense of patients and their families, does not represent progress.

However, the lack of vision and the misinformation presented by NICE does not only affect UK patients. Other countries are affected by these guidelines and they are often being promoted abroad as a valid statement on how ME/CFS should be treated.

This is important to remember. The challenge to NICE could have ramifications to patients and families in other countries. We know that healthcare services in other European countries are using the NICE guidelines in the mistaken belief that this is a useful and accepted document, and probably also to save themselves the expense of looking at this illness rationally or scientifically.

IiME were happy to highlight the amazing work of the Norwegian ME Association in getting their government to agree to fund biomedical research into ME/CFS and to set up competence centres to provide proper treatment. We have heard from our colleagues in Norway that NICE's misinformation is being used there to support the work being promoted by a psychiatric lobby which is very similar to, and probably working in cooperation with, that which exists in the UK and which is seeking to alter the setup of these competence centres.

This is why we fear the MRC will mix the psychiatric view of ME/CFS under a masquerade of plans for future biomedical research.

It is worth remembering the research shown at our conference. As Dr Martin Lerner states on his web site [http://tinyurl.com/6kd3f5].

We now understand the cause of CFS. What this means is that we are able to treat cause rather than only treat symptoms. For instance, the treatment of pneumonia was unsuccessful until it was discovered that pneumonia is a bacterial infection, and the bacterium, the pneumococcus, is treatable with penicillin. Similarly, the treatment of CFS requires etiologic causal understanding. This treatment is now present.

The government and NICE will eventually be forced to recognise this and allow for funding of these treatments and funding of new biomedical research - research which is not diluted with the pointless and detrimental interference of the cabal of psychiatrists who so monopolise the way the MRC currently conduct its approaches to funding of research into ME.

The Whittemore-Peterson Institute

We have stated before that we believe the WPI to be our brightest hope for the future. The WPI have recently opened their web site and we are pleased to highlight it here - [http://www.wpinstitute.org/index.html].We believe that we need to establish a similar centre here in the UK. This is based on our belief that only a centre separated from the current establishment treatment of ME/CFS will lead to future treatments and cures for this illness.

The WPI are holding their annual fund-raising event in September [see http://www.wpinstitute.org/help/docs/IHopeYouDance08.pdf] - this is one fund-raising event which we hope will be enormously successful.

In the meantime if you wish to support this strategic approach to biomedical research into ME then one can make donations directly to the WPI [see here].

2008 Conference DVD

Thanks again to everyone who has purchased the 2008 conference DVD.

The DVD has now been sold to doctors, healthcare staff and patients in sixteen different countries.

We are especially pleased at the response from USA which has justified our decision to continue to offer the NTSC version of the DVD.

The conference DVDs are educational aids for all yet relatively few groups have ordered this.

We have had queries from people who cannot afford to purchase the DVD but would like to watch it. Unfortunately we don't have funding to continually give out free copies, however much we would like to do so, and we have been unsuccessful in obtaining grants to do this. One way to help us and you would be to ask your local library to purchase a copy or if you are a member of a local group then ask them to purchase one for their library.

If you pay membership fees to a national ME charity then you could ask them to purchase copies so that they could loan them out. We can't think of a better way for them to give something back to their members.

Sales of the 2008 DVD has also led to more sales of the 2007 DVD which is still available, is still very current and which has also had an excellent line-up of speakers giving full presentations.

The conference DVDs may be ordered via this link.

Martin Lerner Speaking in Greece

We are glad to see Dr Martin Lerner receiving more recognition for his work as he attends another European conference in October.

Dr Lerner will be giving a 40 minute oral presentation at the 8th International Anticancer Research Conference in Kos, Greece, on 17th October.

IiME feel it is vitally important for ME/CFS to become recognised as a mainstream illness and associations with other research is the way forward. Dr Lerner's presentation will be one of the longest at this conference.

This conference attracted over a 1000 participants last year so it is good to see Dr Lerner's work reaching a wider audience than that usually experienced by ME/CFS researchers. More details of the conference may be found at www.iiar-anticancer.org.

A Statement from the Medical Research Council

Dr Joanna Latimer from the MRC represented that organisation at the IiME London conference in May.

For our Conference Journal (see here) we had requested an article from the Chief Executive of the MRC and posed questions as to the direction of MRC policy on ME (we had received a similar article from Sir Colin Blakemore for the 2007 conference (see "The Strategy of the MRC for Research on CFS/ME" - Journal of IiME Volume 1 Issue 1 p 21-24 - http://tinyurl.com/2mvnzs).

We received the article from Dr Latimer late and this missed the conference. But we have included it here for the benefit of all - [see here].

As stated before we don't believe the MRC is seriously going to change the course of research into ME toward the necessary biomedical research strategy that IiME are campaigning for, and which we have proven, via the data on display at our conferences, to be the only effective way of curing this illness.

The MRC infrastructure needs to be thoroughly reviewed, especially their refereeing system which rejects high-quality biomedical research in favour of pointless, self-serving psychiatric approaches to management of ME.

We can't blame Dr Latimer for this. She is a programme manager and, as one of the speakers at our conference so rightly put it, the MRC programme managers come and go and have little effect.

Compare the 2008 MRC statement with the 2007 MRC Chief Executive's statement. Has anything changed?

RSM - Medicine and ME

After the Royal Society of Medicine announced their intention to hold a conference on CFS in April Invest in ME contacted the then President of the RSM, Baroness Finlay, and passed to her factual information regarding ME/CFS. We also invited her to our London conference and offered help in planning a Medicine and ME conference which we were told the RSM was considering.

We contacted the Baroness again in July and our letter was passed to Dr John Scadding.

Dr Scadding replied to our offer to help by stating that only the following organisations were to be invited to be in the planning of this event - the 25% Group, AfME, AYME, MEA and Tymes Trust.

We replied to Dr Scadding that we thought we could offer valuable experience in planning such an event and have been working on behalf of patients contacting us for help. We weren't sure why those organisations alone were chosen or why an arbitrary number of organisations seems to have been invited.

Dr Scadding rejected our offer, having "sought the advice of a number of others". We can only guess who these "others" are who are advising him.

Dr Scadding went on to describe the reasons for IiME's exclusion as -

"....

1. The group is already very large, with the 5 patient charities, patients with CFS / ME and the necessary RSM staff. Very large groups often have difficulty in reaching a consensus in a committee situation. I have planned many Medicine and Me meetings, usually in partnership with just one patient charity / support group. Patients attending the subsequent Medicine and Me meetings have not complained of bias or exclusion of their interests.

2. I am reasonably confident that the group is representative of CFS / ME sufferers overall, and that no interests will be forgotten, excluded or ignored.

3. The programme for the Medicine and Me conference must be driven by the patients on the planning group.

I think we need to be realistic about what can be achieved in a Medicine and Me meeting. It lasts only about three and a half to four hours. Three or four key areas of interest are nominated by the patients on the planning group; patients speak first on these and each is followed by an expert response. The topics may be about diagnosis, research, treatments, access to treatment, stigma, prognosis, etc etc. During the concluding lengthy panel discussion, any matter of concern about the condition to those in the audience can be raised, not just those forming the focus of the patient presentations.

It is clearly impossible in the time available during the meeting to cover every aspect of any disease, and patients have often requested further meetings (which we are happy to consider, but we need to be mindful of the multitude of chronic diseases that exist, each deserving of a Medicine and Me meeting).

I cannot predict at this stage the topics that will be chosen within CFS / ME to form the focus of the Medicine and Me meeting, but if you would like to make some suggestions now, I would be very pleased to float these at the planning group meeting.

I am aware of the interest of Invest in ME in promoting biomedical research, and I am sure this will be discussed. Indeed, it may well be that this is one of the topics chosen, but that is for patients to decide.

...."

Meanwhile IiME are planning our 2009 biomedical research conference.

ME Story - 1

"I have attempted to put forward ME as a possible cause for these low levels but, basically, the docs don't want to know. For them, there has to be a 'real illness' for my test results.

However, because of my test results, they no longer tell me my illness is in my head, they just won't accept ME as the cause.

So, for now, the docs just say they don't know what's wrong. One doc went so far as to say 'You have a syndrome we don't understand'"

Thanks to Jim for submitting this. Read more of Jim's story here. Read other ME stories here.

ME Story - 2 - Nikki McNougher

We did not know Nikki McNougher - [see http://news.bbc.co.uk/1/hi/england/west_midlands/7588385.stm].

Nikki chose an assisted suicide rather than continue with the pain she was experiencing from ME.

Her husband, Peter, contacted the chairman of IiME in May, shortly after our conference, to explain the story of his wife and her wish to offer her tissues/organs for medical research into ME.

We referred to this obliquely in June's newsletter but were not able to say more at that time and were still incredulous that we were presented with such a story. It was impossible to comprehend how such a situation could exist in today's Britain.

Peter had asked IiME to help with using tissue from Nikki's body and IiME facilitated this by contacting a doctor who was able to organise this.

If the story of Sophia should have been a watershed in the treatment of people with ME and should have been the turning point when ministers, medical officers, healthcare staff and organisations representing people with ME began to act responsibly and with a sense of morality then this story should actually force the government to act. We fear that none of this will happen.

It is ironic that people such as Nikki can get help to die yet the government provides no help for people like her to live.

We wonder when the Chief Medical Officer of this nation will feel it is time to act.

ME and the Media

IiME have been quietly working behind the scenes attempting to influence and affect some stories in the media regarding ME. We have been discussing with some film production and TV companies with a view to publicising the scandal regarding ME in this country and abroad. We have also funded copies of our DVD and distributed them for free to many press and media individuals in the hope that the real science and facts would be able to generate more interest.

One of these contacts now requires stories from people who are willing to be interviewed and who have been threatened with sectioning or have been denied treatment due to their ME condition. If you are willing to be contacted please contact us at info@investinme.org and provide us with your contact details.

We hope to continue to make progress in changing the perception of ME by our contacts with the media. If you would like to help in this area then please contact us.

ME Book

You may be interested in a book from Nasim Marie Jafry -

It's 1983 and 20-year-old university student Helen Fleet should be enjoying the best days of her life, but while all her friends go on to graduate and have careers in London, she is forced to return to her parents' home, bedridden with vile symptoms that doctors can't explain and often don't believe. She is eventually diagnosed with M.E., a cruel illness that she must learn to live with over the next decade. All of her relationships are tested - and changed - by her condition, but Helen's story is so much more than an account of her suffering. At times sad and at times funny, the author skillfully leads the reader through the trials and tribulations of Helen's life, perfectly capturing her unusual experiences as a twenty-something woman living in 80s Scotland with a mystery illness.

HarperCollins publish this book and the link to it is here -

http://www.harpercollins.co.uk/Contents/Title/Pages/default.aspx?objId=44929

ME Story - 3

One of our supporters (J) has this story -

6 years ago I decided to try to get fit. In the process I experienced a left sided lower abdominal injury, this triggered IBS. In time I started to experience Insomnia, deep tissue pain and chronic fatigue. I had one GP who told me to pull myself together and another one who said if she'd known I had multiple health problems she wouldn't have taken me on. I have deteriorated to a point now where my heart is affected and the lymph nodes in my throat are so swollen it feels like I'm choking. I have tried the Marshall protocol and the CPN help protocol and both give a certain amount of relief but I never quite get the cure I'm looking for.

If anyone has information and help on what other courses of action would be possible then we would be happy to put you in contact with J or pass on information.

Best wishes to all

Invest in ME

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