I have never been called a ‘Beauty’ but my chronic illness put up a barrier between me and the world every bit as tangled and high as Briar Rose’s thorn hedge. Being struck with M.E. really can feel like being ‘cursed' – one day I was enjoying a perfectly normal life, the next poof! it vanished.
Even after nine years, trying to manage and learn about my condition often feels like trying to hack my way through a tangled, thorny mess.
And of course...I do sleep a lot
Wednesday, 8 September 2010
A letter to my MP
[*Please note - the awesome SMC query letter that I attach to the bottom of this was put together by Chris Douglas of the Facebook group XMRV Press Releases .]
Please excuse this being an email rather than a 'proper' letter - there are a few web links in it, and I thought they would be easier to follow from an email!
I'm writing to you as my MP on one broad subject, and one narrow. The broad is the general approach that is taken in this country (largely thanks to the former government) towards myalgic encephalomyelitis. The narrow is concern over how the Science Media Centre set up by New Labour is filtering the science surrounding this illness to the national press, and possibly also our politicians. (Myalgic encephalomyelitis, or ME for short, is also sometimes called Chronic Fatigue Syndrome - which is rather like calling Alzheimer's 'Chronic Forgetfulness Syndrome', so I will stick with the term ME in my letter.)
You might have seen reports in the news yesterday from Dr Jill Belch's research team at Dundee University, ( http://www.bbc.co.uk/news/uk-scotland-tayside-central-11204884 ) who have found clear evidence of white blood cell abnormality in children with ME. This is evidence that has previously found in adults with ME - a truth which in contrast to yesterday's mass news coverage has been barely whispered in our national press before now.
Please find below, a copy of a letter sent to the Science Media Centre's Board and Scientific Advisory Panel which seeks clarification of their press release about US research into a new human gammaretrovirus and its links with myalgic encephalomyelitis. I think (hope!) it might interest you as my MP (I live in Whitwick and have suffered with ME for almost six years now). You may not have heard of this research - in fact, I would be surprised if you had, since although it was very widely reported worldwide, it has barely seen the light of day here in the UK.
I hope that you will not mind me writing to you about this - I do feel guilty about adding to what I'm sure is already a huge workload. I've actually been trying for a while to raise the nerve to write to you on the subject of ME, the exciting new research that is being done around the world (while the UK still throws money at talking therapies - for a condition recognised by WHO since 1959 as neurological), and the way it is handled in our country. This latest press release from the SMC finally pushed me into it, along with the announcement recently that anyone who has ever had ME/CFS will be banned for life from donating blood in the UK from 1st November this year, bringing the guidelines for ME sufferers into line with those for other relapsing remitting conditions like MS - and safeguarding our national blood supply at last from what may be a transferable illness. It really is time UK science and health stopped lagging behind the rest of the world. Didn't we once have the reputation for leading the world in the field of Science?
It frankly concerns me that MPs as well as journalists may make the SMC their first stop for information on the subject of ME, since the ME 'expert' there (Professor Simon Wessely - the man who claimed the Camelford poisoning was a mental disorder) is not a biologist, virologist or biochemist but a psychiatrist who firmly advocates the idea that ME is a mental disorder. All information on ME and anything connected to it emanating from the SMC seems to reflect this, with the possibility of viral cause or connection routinely rubbished. (Professor W has yet to explain how white blood cell abnormalities such as those found by Dr Belch's team could be caused by a mental disorder or cured by Cognitive Behavioural Therapy - but I digress.) The SMC has yet to issue a single press report on the subject of XMRV (or any research indicating a viral connection to ME) that did not have a negative spin.
This same bizarre view of ME as a mental disorder permeates the NHS and NICE Guidelines, and has led to children with ME being removed from their parents and sectioned in mental health institutions on the grounds that they were 'faking' and the parents were 'encouraging the child's abnormal illness beliefs'. The parents' 'crime' being that they insisted their children were ill, not mad - and insisting that their children get help. Children with ME are labelled 'school refusers' and adults with it 'malingerers'. It's almost impossible to find words to tell you how hurtful it feels to be on the receiving end of that. Before ME, I was an active, fully employed woman. I did voluntary work in my spare time, and only the year before I became ill completed a 100km trek in Iceland to raise funds for Macmillan Cancer Relief. I now need a wheelchair for walks longer than ten minutes, cannot drive, and suffer real physical pain every day. And I'm lucky - about 25% of those who share my condition are completely bedbound. It is a mystery to me how anyone can say such a massive physical change in me is caused by me simply 'believing I am ill' or assert that psychotherapy could treat or cure my condition (I've tried it, since it was all the NHS could offer me - it helped not a jot). Research from around the world has been building for years that there is a viral link (whether causal or not) to ME, and that ME sufferers show very physical symptoms like white blood cell abnormality. In short, it's clear that what we need is more serious biomedical research and less psychiatric hoodoo. Whatever you read in the press, my dream and that of everyone with this illness is not to live as invalids supported by others for the rest of our lives, but to have back enough of our 'old' lives to be useful members of society again. Research such as that done up in Dundee is a shining example of what is needed, not money wasted on talking therapies (which do no good) and Graded Exercise Therapy (which has been proven to make people sicker).
I'm struggling to keep pace with and understand a lot of the science around my illness - I would have struggled with it even at the top of my mental form, but these days I deal with cognitive (and of course, energy) problems too, courtesy of ME. It would really help to be less worried that our national press and MPs are being fed biased information (not least because the Press is often where I have to get my own information from). It would be wonderful if as my MP you could take an interest in the subject. The All Party Parliamentary Group on ME has reformed after the election, and should be sitting soon - I'm sure they could provide you with lots of information; maybe you might even have the time to get involved?
If you could help us obtain answers to the queries in the letter copied below, and perhaps keep your eye on how ME is being treated in general, I and about 250,000 people with ME here in the UK would be grateful. I'm very happy to try to find more information for you if you have questions on the subject (though I'm very much not a scientist!)
With best regards,
Ref press release dated 23.8.10: Expert reaction to PNAS study on virus sequences found in blood of chronic fatigue syndrome patients
Dear xxxx Please can you clarify the following points.
1. Why the press release title uses the term ‘virus’ (as per swine flu), does not state that the PNAS study discusses a ‘retrovirus’ (as per HIV) and does not explain the very significant difference between the two ?
2. Why Professor Weiss and Professor McClure do not qualify the statements below
“...the mouse retrovirus [i.e. the murine leukaemia viruses described in PNAS] is not the same as the one linked to CFS in a report published last year [i.e. XMRV as described in Science]…” Weiss
“They describe murine leukaemia virus (MLV)-related sequences that are genetically distinct from XMRV.” McClure
by explaining that:
(a) XMRV is, in fact, an MLV-like virus 
(b) the nomenclature ‘XMRV’ was created by Urisman et al to describe the MLV-like virus discovered in prostate cancer tissue 
(c) the ‘XMRV’ discovered in Myalgic Encephalomyelitis (ME) patients has known genetic differences to that discovered in prostate cancer (i.e. these are different variants of XMRV)
“Thus, the complete XMRV genomes in these CFS patients were >99% identical in sequence to those detected in patients with prostate cancer.” Lombardi et al, October 2009 
“[F]ive years ago, a retrovirus resembling a murine leukemia virus (MLV) was found in patients with prostate cancer (1), and last year, a similar gammaretrovirus was identified in patients with chronic fatigue syndrome...” Courgnaud et al, August 2010 
(d) subsequent presented but unpublished data (which one would expect the Professors to be aware of and mindful of when preparing a press release) have elucidated these differences, have been complemented (rather than contradicted) by the PNAS paper and may result in nomenclature amendments to avoid further confusion in scientific reporting of MLVs, MLV-like viruses and their respective variants.
3. Why neither Professor Weiss nor Professor McClure explain that the reason why the ‘ME XMRV’, specifically, may not have been identified in the PNAS study (nor in any other negative study) is that the original Science study (by Lombardi et al) has not yet been replicated ?
“However, in the study of Lombardi et al. (3) and studies reviewed subsequently by Silverman et al. (22) the evidence for XMRV infection in humans not only involved detection of viral nucleic acids using PCR, but also reported the detection of viral antigens, detection of anti-viral antibodies, the ability to culture the virus in a prostate cancer cell line, the detection of gamma retrovirus particles by electron microscopy, and transmission of infection to macaques. In sum, none of the four studies that have failed to confirm the PCR evidence reported by Lombardi et al. (3), nor our own study, has attempted to fully replicate that study.” Lo et al 
4. Why both Professors Weiss and McClure present criticisms of the PNAS paper but fail to discuss the significant positive outcomes of this work, such as the validation of Lombardi et al’s finding of a retroviral presence in ME ?
“Although we find evidence of a broader group of MLV-related viruses, rather than just XMRV, in patients with CFS and healthy blood donors, our results clearly support the central argument by Lombardi et al. (3) that MLV-related viruses are associated with CFS and are present in some blood donors.” Lo et al 
“This study supports a previous investigation[Lombardi et al. Science October 23, 2009 326: 585]that showed XMRV, a genetic variant of MLV-like viruses, to be present in the blood of people with CFS. The study demonstrates a strong association between a diagnosis of CFS and the presence of MLV-like virus gene sequences in the blood.” US Food and Drug Administration 
“In contrast to the study that first linked XMRV to CFS, the researchers found a more genetically diverse group of MLV-related viruses….However, these findings do support the earlier study's results.” US National Institutes of Health 
5. Why Professor Weiss criticises the PNAS paper for being “based on small numbers” (i.e. 37 samples and 44 controls) without referencing that the “reputable scientific groups” in the Netherlands and at the US CDC (which both failed to detect XMRV in ME patients) used similar numbers (32 samples/43 controls and 51 samples/56 controls respectively  ?
6. Why Professor Weiss states that he is “sceptical of the claim” [of “an association between a retrovirus of mice and human chronic fatigue syndrome”] but does not declare his own co-authorship of papers which seek to disprove human retroviral infection  nor state that Lo et al took extensive steps to ensure that they did not pursue a ‘rumour virus’, as described in one of these papers?
“Voisset and coauthors (20) recently reviewed the pitfalls encountered in the identification of new retroviruses (“rumor viruses”). False-positive results can occur for a variety of reasons. Viral gene sequence specific PCR primers can non specifically amplify nucleic acid sequences that differ from the target sequence. For this reason, we sequenced every positive PCR product (every amplicon of the predicted size) and confirmed MLV-related gene sequences in every instance.” 
7. Why Professor McClure’s involvement in a research study that failed to replicate the Science paper's methodology and, hence, its findings  was not considered to be a conflict of interest in reviewing the PNAS paper (and its bearing on the Science study’s findings), and why this potential conflict of interest was not declared in the press release ?
8. Why Professor Weiss does not specify that one of the “reputable science groups in the UK” was led by Professor McClure  ?
9. Why US scientists who have been involved directly with both the PNAS and Science papers were not invited either to contribute to this press release or given the opportunity to reply to its remarks ? Perhaps this would have facilitated a more balanced and constructive appraisal of the research which, in turn, may have encouraged a pro-active and sustained media interest in this unfolding science.
“For many years, there have been sporadic reports of additional human retroviral infections, particularly in cancer and other chronic diseases. Unfortunately, many of these putative viruses remain unproven and controversial, and some retrovirologists have dismissed them as merely "human rumor viruses."”