Invest in ME and our European ME Alliance partners Spain (Liga SFC), Ireland (IMET), Sweden (RME) and Germany (Fatigatio e.V.) were either contributing or closely involved in some of the studies that were presented at this workshop. XMRV was found in UK and Spanish patients but not in the German or Swedish ME patients according to the studies presented at this workshop. Professor Jonas Blomberg’s team in Sweden was however able to identify 3/5 positive samples sent to him by the WPI so it shows that his methods worked.

A study by Villinger et al. found chronic XMRV infection in tissues of macaque monkeys but not in blood.

The UK studies which IiME part-funded are being prepared for publication by the WPI.

Abstracts and presentations of the first International XMRV Workshop are available here http://www.virology-education.com/index.cfm/t/Workshop_material/vid/1A5D65BD-FB8B-8AE1-5E10829372D080B4

Note: A separate German study by Fischer et al found XMRV via nasal swabs in immunocompromised patients which suggests transmission through respiratory secretions is likely.

Professor Anthony Komaroff Webinar

On 16 of October 2010 CFIDS Association of America hosted a webinar by Professor Anthony Komaroff in which he summed up the CFS/ME research up to now very well. The recording is available to view again here - http://www.cfids.org/webinar/091610.wmv  and the slides can be seen here http://www.cfids.org/webinar/slides-091610.pdf. The presentation is well worth watching as it is very easy to understand.

Study Finds Oxidative Stress and Increased White Blood Cell Apoptosis in Children with ME

While the NIH/FDA study received no media coverage in the UK a study by Kennedy at al. from the Dundee University, Scotland received ample amount of media interest [http://www.bbc.co.uk/news/health-11209605]. This study which was started in 2006 investigated biochemical and vascular aspects of paediatric ME. Increased oxidative stress and increased white blood cell apoptosis was found to be present in these children. These results reflect earlier studies done on adult ME patients and point to viral infection.

European ME Alliance member Germany Fatigatio e.V. held its first International ME/CFS Conference in Dortmund 24-25 September 2010. It was attended by about 150 delegates and it was fascinating to see how attitudes of some in the audience changed once they had been presented with information from international experts such as Dr Judy Mikovits. It is very important that experts in various countries get to meet and discuss their research to find common ground and make sure further research is done on similar patient groups as the definition of ME has been allowed to be watered down by the CDC. EMEA also held its meeting in Dortmund and Dr Judy Mikovits was in attendance to give an overview of the first XMRV workshop held in Bethesda. More details and photographs here –  from Fatigatio's web site at www.fatigatio.de or via emailing info@fatigatio.de.

New ME Research Symposium

MLV-Related Viruses

Bob Courtney has supplied the following article to help explain MLV-related viruses - http://www.investinme.org/Article-800%20MLV-Related%20Viruses.htm

The USA CFS Advisory Committee (CFSAC) is a panel of eleven people who meet several times a year over a three day period and the recent CFSAC meetings held on 12-14 October 2010 have been broadcast over the web.

The previous CFSAC meeting held last year, after the Science paper linking  ME/CFS with XMRV was published, seemed to indicate a new era of research.

Our impressions from the first day's science meeting were very mixed. The uplifting and forward looking mood of last year's conference was gone and replaced by views and research from the past with no clear direction seemingly coming from the participants. The WPI XMRV research was hardly mentioned apart from doubts yet again being spread about contamination and Dr Chia's enteroviral research would have got no mention at all had it not been brought up by Dr Klimas in the discussions that followed on from the presentations.

This year the committee completed its three-day meeting by endorsing two recommendations for HHS, one of which was to add the "ME" to the committee's title (CFS).

It is difficult to understand why we are still talking about correct diagnosis and how to get there when we have the Canadian Clinical Guidelines to help in making that correct diagnosis. These are consensus criteria which involved clinicians who have diagnosed thousands of ME patients and have seen patients from outbreaks of the disease. The experience of these clinicians needs to be used to teach other doctors to diagnose correctly. Dr Nancy Klimas showed clear biomarkers and new research should build on those and move on with times.

Corridor gossip was casting doubts about the patients in the Science study having been infected with injections they had been given over the years as treatment. This is something which cannot be levelled at UK patients as they certainly do not have any access to experimental treatments so there should be no fear of contamination from treatments in the UK cohort, a study of which is being prepared for publication. It also seems that some researchers do not know what kind of patients they are studying. To get progress researchers need to work closely with clinicians to understand the illness they are supposed to be studying and to be able to formulate a meaningful hypothesis.

The name change suggestion to ME/CFS again provides a mixed message. Whilst accepting that we need to move away from the CFS term by using ME in the name it was also suggested that ME can stand for either myalgic encephalomyelitis or myalgic encephalopathy - an unfortunate twist and a completely wrong message. 

We have been here before.

Whilst a move away from CFS might be a good thing, using myalgic encephalopathy does no good for people with ME or their families and will not help future research or help raise awareness. This debate has been performed in the past. The view has been put forward that encephalomyelitis does not accurately describe the disease - even though the WHO code is encephalomyelitis and there is convincing evidence of inflammation. Those pushing the term of encephalopathy may well have other motives rather than the good of people with ME as Dr Bruce Carruthers principal author of the Canadian Guidelines has suggested in the past - click here http://www.investinme.org/Article%20010-Encephalopathy.htm.

ME stands for myalgic encephalomyelitis - the official name. The name myalgic encephalopathy does not exist and, when there is no consensus on what new name should be used, it is pointless to muddy the waters by introducing another temporary name which has no clear or credible backing.

The second day of the CFSAC heard patient testimony. Pat Fero provided some of this and gave her pdf document to Invest in ME for publication. This document - Inadequate National Institutes of Health funding for New Chronic Fatigue Syndrome Grants follows the gathering of evidence from requests under the freedom of information act. This is available as a pdf - http://www.investinme.org/IIME%20Campaigning-NIH-CFSAC-2010-10-01.htm.

This paper shows clearly how little public funding has been spent on an illness which affects so many. And how similar is this to what has happened in the UK?

The NHS Blood and Transplant agency has issued a press release regarding the lifetime ban of blood and transplant donations from people diagnosed with ME/CFS. This will be implemented from 1st November 2010.

Details of this are available from the NHS Blood and Transplant and The National Blood Service websites (www.nhsbt.nhs.uk and www.blood.co.uk).

This news was published by major media outlets on 8 October 2010 and the reason for this ban was given as not to harm the ME patient’s health as ME is a relapsing condition. The press briefing states that -

There are many diseases of unknown causes but they are not on the banned diseases list.

Is the retrovirus research having an effect?

Our correspondence with the CMO pointed out inconsistencies in the previous advice. Why isn’t the medical profession questioning the so called Wessely school of thought on ME. It is after all doctors who diagnose people. When ME patients provide evidence of biomedical research into ME it is often dismissed yet these same doctors seem to accept, against all realms of common sense, the reasoning of the behaviouralists and psychiatrists.

Invest in ME have written to the Blood and Transplant Agency asking why, in their press release, they chose not to reference the Lo et al. paper from NIH/FDA published by PNAS in May - yet conveniently refer to the negative studies which were published in much lower impact publications.

Our letter states -

We also wondered why there was suddenly such concern about the ME patients’ health status when NICE and NHS Plus guidance recommend CBT and GET as effective treatments for ME/CFS and proscribe any biomedical treatments, as shown in this clip -

The spin on the blood donation ban for people with ME is just that. There would, of course, be no reason to initiate a life time ban on a segment of the population if it were to protect the donor’s health.

Why would this exclude people who have had ME and “recovered”?

Yet again the establishment hides the true reasons for the blood ban even though it is glaringly obvious that something very unpleasant is being hidden.

All ME patients and their carers should know that the reason for banning blood donations from ME patients is to protect (albeit belatedly) the blood banks in this country – at best as a precaution against infecting people with a virus/viruses implicated in causing ME, perhaps more likely to avoid the litigation of which we have warned the CMO.

Eventually the full story will be heard. 

In the meantime we shall be enquiring as to whether this ban applies to organ donation as well.

Impact Factor and Research

The Impact factor scale - http://en.wikipedia.org/wiki/Impact_factor 

Whilst the UK authorities now believe it is unsafe for people with ME to donate blood, and are admitting this fact by placing the lifetime ban on donations from ME patients, so the establishment continues to act as though nothing had happened and continue false trials and even celebrate a quarter century of failure and misinformation.

Despite the need to prohibit people with ME from donating blood due to the possibility of contamination of blood stocks via a viral agent from people with ME there are still senseless studies being carried out.

Yet another study which is examining the Lightning Process business by Dr Esther Crawley has been given funding and ethical approval despite the underlying theme of this "training programme" which states that people have to ignore their symptoms. How strange that this study can go ahead, using children, when it is clear that the patients' health is not of paramount importance. The study protocol is available here [http://www.bristol.ac.uk/ccah/research/childrencomplexhealthneeds/chronic-fatigue/smilestudydocuments/smprotv6final.pdf].

Here are just a few observations from the study protocol.

• This study uses school attendance as an outcome measure. We know from experience that school attendance itself means little as children may spend all their energy in getting to school and not learn anything. What is the purpose of education? Is it important that children, however sick, just sit in a class room to boost statistics by ticking the attendance sheet or is it important that children are given the opportunity to learn in a way suitable to their illness?

• Questionnaires are not valid as outcome measures as the whole idea behind LP is to teach participants to stop ‘doing ME’ and they are told to say during the course to say they do not ‘have’ ME but they are ‘doing’ ME. If the participants were MS or cancer patients would they be told the same i.e. stop doing the disease and one’s symptoms and the disease disappear?

• Children are taught to lie about their reality. (“The language used by young people will be discussed and in some cases challenged. “) This goes against all the common sense of listening to the child and believing in them.

• External observers are listed as AYME whose medical adviser the principal investigator of the trial, Dr Esther Crawley is- a conflict of interest?

• The independent observers in the room might be influenced by the NLP/hypnosis techniques used and therefore their objectivity may be influenced. How is this scientific? LP business practices hire PR companies to promote their businesses whenever there is discussion in the media about a biomedical research study such as the recent study from Dundee University which found biochemical abnormalities in children with ME [http://archpedi.ama-assn.org/cgi/content/abstract/164/9/817]. They waste no time in trying to get case studies promoted on the back of legitimate research. One can only hope that the children and young people and their carers think carefully before committing themselves to clinical trials like this.

• It must be confusing for the participants of this trial when they know by now that they are never allowed to donate blood because it might affect their health but the LP trial they take part in tells them there is nothing wrong with them, that their bodies are just thinking they are ill so they must stop the vicious cycle, the adrenaline loop. Why can’t they donate blood if they have been successful in stopping the vicious cycle and cured themselves of ME? No doubt we’ll soon learn the explanation to this from the LP practitioners as the earnings from vulnerable people are boosted by fickle media coverage and .

The involvement of a supposed children's ME charity in this farcical study is shameful.

ME Business Studies -2

Normally we wouldn’t highlight anything or anyone whom we feel is irrelevant for ME patients and their carers. Here is an exception. Even with a ban on donating blood for ME patients, extensive biomedical research showing the organic nature of the illness and more and more doctors and researchers shaking off the misinformation of the past – still we see the establishment continuing to act as though nothing had happened.

Now Barts celebrates their view of a CFS/ME “service” - celebrating their own 25 year anniversary by hosting a conference consisting of presentations from, amongst others, Simon Wessely, Esther Crawley, Peter White and Trudi Chalder (“What makes therapy work”).

A look at their program (http://www.manchestercfsme.nhs.uk/document_uploads/Conferences_Training/PROGRAMMElmdt29112010.pdf ) shows everything that is wrong with the way this organisation, and their supporters, treat this disease and the patients who have it. With the government spending review continuing perhaps this particular conference might well be seen to provide proof of one organisation which could happily be included in the spending cuts – with a clear benefit to the public.

IiME may have been critical of the CMO, MRC and other establishment organisations in the past. But the criticism has been based on what we have seen. Actions will always speak louder than words.

Above we can read of funding and resources being provided to two dubious trials – the PACE trials and the Lightning process business – neither of which will benefit people with a neurological illness such as ME. One of the main criticisms we have had relates to the inconsistencies used by establishment organisations regarding ME.

To our knowledge the GMC has failed to criticise or even comment on the Lightning Therapy business training programme being used to treat patients with a neurological illness nor taking any action against those who dismiss ME as a behavioural illness and treat it accordingly, or ignore it and the possible co-morbidities associated with ME. Neither does it comment on flawed research being performed under the guise of serious science. Yet the GMC instigate the banning a doctor who attempts to treat ME from a biomedical viewpoint – Dr Sarah Myhill (http://www.bbc.co.uk/news/uk-wales-mid-wales-11550075) – using the excuse supplied by GMC panel chair Dr Peter Maguire that -

The hypocrisy and inconsistency is astonishing.

Read this article from Margaret Williams - http://www.investinme.org/Article413%20Knowledge%20or%20Belief.htm.

With the flawed and discredited PACE trials being published it is crucial that people are ready for the spin from these trials which will be put forward by organisations such as Barts, the establishment, the media and by those charities which continue to support the non-science of the psychiatrists, or who sit on the fence.

The first in a series of papers coming out from the PACE Trial has been published in the Journal of Royal Society of Medicine.[http://shortreports.rsmjournals.com/content/1/4/28.full].

This paper gives an idea of the patients being put forward for the PACE trials. The article shows that either GPs are incompetent in screening patients for these trials or the Oxford criteria select patients with high rate (56%) of psychiatric co-morbidities.

Jason et al. have found that the Canadian Consensus criteria select cases with less psychiatric co-morbidity and more physical functional impairment and fatigue/weakness than the Fukuda (CDC 1994) criteria let alone Oxford criteria. [Jason LA, Torres-Harding SR, Jurgens A, Helgerson J. Comparing the Fukuda et al. criteria and the Canadian case definition for chronic fatigue syndrome. Journal of Chronic Fatigue Syndrome. 2004; 12(1):37-52.

It is difficult to imagine research into any other illness choosing a patient group which was defined by such loose criteria as the Oxford criteria. It is the equivalent of studying brain tumours and accepting everyone with a slight headache to be part of the study.

The NICE guidelines for ME are to be revisited in December to ascertain if they need to be revised.

With NICE having been taken to a Judicial Review by patients with ME and with all UK ME organisations crticising the NICE guidelines (save for those establishment charities which have accepted money from the government to support their policies) one would think it obvious that these guidelines need to be completely revised. Yet it is stated that the previous GDG members will be reviewing the guidelines.

This seems macabre. We believe the previous GDG group needs to be supplemented with new stakeholders to represent the more current views. There is little doubt that the NICE guidelines need to be upgraded to include results from biomedical research - something which the previous GDG failed to do.