For UK supporters, please consider emailing Jeremy Vine on Radio 2.
He is interviewing Kay Gilderdale on Tuesday.
Here is the facebook group standard letter which you may wish to use or adapt:
http://www.facebook.com/l.php?u=http://www.bbc.co.uk/radio2/shows/jeremy-vine/contact/&h=1ec34
Dear Jeremy Vine,
I write to you as a sufferer of ME (Myalgic Encephalomyelitis) and on behalf of the ‘Panorama ME. Investigation Campaign ’
http://www.facebook.com/group.php?gid=397706469637&v=app_2373072738#!/group.php?gid=397706469637
a Facebook Campaign which comprises hundreds of sufferers of this devastating illness, and which includes members of charities: Invest in ME., ME Association and Action for ME. amongst others. The purpose of our organisation is to increase the awareness, via television and the media, of the suffering, stigmatisation, and neglect which the estimated 250,000 sufferers in the UK alone have to endure on a daily basis, and to apply pressure on the Government / MRC to review their policies regarding the paltry sums of money which are invested into the biomedical research of this neurological illness (as recognised by the WHO. icd10).
We demand that government investment into ME. truly reflects the seriousness of this disease, both to the individual sufferer and to the economy of the UK as a whole, and that there is a change of emphasis from NICE, the MRC, and the DOH from the ‘treatment’ of symptoms with the likes of CBT (Cognitive Behavioural Therapy) and GET (Graded Exercise Therapy) to the discovery and treatment of the cause of the illness, via proper biomedical research.
Frank N.M Twisk and Michael Maes of the ME-de-patienten Foudation, Limmen, the Netherlands, and Clinical Research Center for Mental Health (CRC-MH) in Antwerp respectively, recently wrote a paper where they claimed that it was unethical to treat patients with ME/CFS with ineffective non-evidence based and potentially harmful 'rehabilitation therapies' such as CBT/GET
http://www.investinme.org/Article-342 CBT and GET Ineffective for ME.htm.
Please see also
http://www.investinme.org/Article-363 Can the MRC PACE Trial Be Justified.htm
But no matter how much evidence is presented to the MRC, DOH and NICE etc. it is always ignored,
http://www.investinme.org/Article400 Magical Medicine.htm#Professor Hooper Letter to MRC2,
as are the invitations to attend any of scientific annual conferences in ME. where the latest biomedical (privately funded) research is explained.
A total of 12.1 million has been invested in ME - but not a penny to biomedical research. The MRC have not accepted any funding requests for biomedical research, yet the World Health Organisation recognises ME. as a neurological illness. The MRC have rejected high-quality biomedical research proposals but have agreed to fund research based on psychiatric therapies using flawed diagnostic criteria. The complete neglect of this illness by subsequent UK governments is not only extremely bewildering, especially considering the numbers of deaths which have been caused by the illness,
(there have been three high profile ME. related deaths recently, Lynn Gilderdale, Annabel Senior and Sophia Mirza, in the case of Sophia, the post mortem showed that she had a diseased spinal cord), but when considering the history of the illness, is possibly sinister.
The first clinically documented outbreak of ME. was first recorded in 1955 at the Royal Free Hospital, which led to Dr Melvin Ramsay categorizing the illness as an infectious disease. The name provided by Dr Ramsay for this illness reflected his patient’s diverse range of neurological and physical symptoms. Myalgic Encephalomyelitis, translates to mean inflammation of the brain and spinal cord.
Over 60 ME. outbreaks have been recorded worldwide since 1934. In Lake Tahoe in 1984, 259 persons were affected from an outbreak of ME, of which three to this day are still bed bound . During this outbreak, Drs Paul Cheyney and Daniel Peterson undertook MRI scans of the afflicted patients. The results of their scans showed that the ME. Sufferers had lesions on their brains similar to those which are evident with AIDS patients. Despite these remarkable discoveries, the CDC did not follow up the physician’s work and dismissed the outbreak as hysteria.
The following year, in 1985 there was another outbreak in Lyndonville NY. This outbreak affected 210 people, 60 of whom were children. The official response from the CDC and New York Health Departments was that once again this was mass hysteria, even though not one of their representatives talked to a single patient. In 1990, Dr David Bell worked with Dr Elaine De Freitas, and Dr Paul Cheyney, and a retro virus was found in material published. A second paper had been accepted by PNAS and contained a photograph of C type retro viral particles from a tissue culture of spinal fluid of one of the children in the Lyndonville outbreak. This paper was suddenly pulled and not published after a couple of flawed negative papers. A complete description of these troubles times is in Osler’s Web by Hilary Johnston. The funding for these studies was pulled and all work abruptly stopped.
Please see:
http://www.rescindinc.org/primetime1996.wmv
In the years which followed the well publicised ME outbreaks in the US. Governments in the UK and US made moves to muddy the waters. The new benign term used for the illness in the US. Chronic Fatigue Syndrome was introduced to the UK in 1994, which removed any notion that the illness could be contagious, whilst also undermining the seriousness of the condition. The views of the psychiatric lobby on both sides of the Atlantic became undisputed by Health Authorities despite any supportive scientific evidence whilst genuine scientific papers were ignored.
Scientific and medical findings showed that ME. was not a psychiatric illness but a serious physical illness, similar in some ways to HIV/ AIDS. Unfortunately many millions of ME. patients were mis-diagnosed with having a psychiatric illness and wasted many years taking useless drugs. It is now very obvious that psychiatric drugs cannot cure ME./CFS. Several top doctors, researchers and professors had to revise their definition of ME./ CFS as a result of these new scientific findings. Yet the general public remained in ignorance of what ME./ CFS really was, many still believing it to be a psychiatric illness.
Please see
http://www.cfs-ireland.org/history.htm
These dismissive attitudes still continue today, however in October 2009, the Whittermore Peterson Institute, Institute for Neuro Immune Disease, which is affiliated with the National Cancer Institute and Cleveland Clinic in Reno Nevada, dropped the bombshell which the scientific community have been crying out for.
In a peer reviewed paper published in the prestigious Science journal, the WPI detected the retroviral infection XMRV in greater than 95% of the more than 200 ME/CFS, and Fibromylagia patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections.
Please see:
http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf
Unfortunately over seven months have passed since the Science journal was published, and the same old spoiling tactics are being undertaken by the Health Authories in the UK and US. The CDC has refused to fund any replication studies, searching for XMRV in ME./CFS patients, and have only commented once on the WPI findings, where they were quoted in saying that the Science publication was not likely to turn out to be anything. This quote was made only weeks after the publication was released.
In the UK, a Psychiatrist, Simon Wessley, who wishes to have ME. Declassified from a neurological to psychosomatic disorder co wrote the paper with Dr McClure at the Imperial College London which dismissed the presence of XMRV in ME. patients in the UK, and who rushed to get the paper through with only four days of peer review. It has since become apparent that the WPI had detected XMRV in patient samples from both Dr Kerr's and Dr Van Kuppervelds cohorts prior to the completion of their own studies.
Please see:
http://www.wpinstitute.org/news/docs/DearDrMcClureaw4.pdf
As a prominent British Celebrity, with a considerable media presence, and the presenter of the BBC's most well respected documentary Panorama, and the flagship Jeremy Vine radio programme of the BBC2, we write to you to ask for your support and contribution in our cause of getting the plight of ME. sufferers broadcast to the nation in a special episode of Panorama.
Please see our online petition to get Panorama to investigate ME.
http://www.ipetitions.com/petition/meinvestigation/
We ask that you investigate why health authorities on both sides of the Atlantic refuse to fund biomedical research into this illness, despite the overwhelming body of evidence which proves that ME. is a physical illness with devastating symptoms. We ask that you question why none of the 5000 medical papers produced to date have been read and acted upon by the MRC and DOH (such as the neuro-imaging studies funded by ME research UK and undertaken by Professor Basant Puri, the results of which show clear biochemical and structural brain changes in ME. patients), and to investigate the completely unsuitable process ME. sufferers have to go through in their attempts to receive Employment Support and Allowance from the DWP.
With the ground breaking discovery of a link between ME. and the retro virus XMRV (Xenotropic Murine Leukemia Virus – Related Virus) undertaken by the Whittemore Peterson Institute for Neuro- Immune Disease of the US. in October 2009, and the earth shattering implications for the world’s blood supply if ME. is in fact found to be transmissable, the time is now right for a new media investigation into this disease. As well as the WPI research, I list some of the great body of scientific evidence which provides conclusively that there are physical and biological differences between ME. sufferers and healthy people, and that it is not ‘all in the mind’.
• ME has been classified by the World Health Organisation in the international Classification of Diseases as a neurological disorder since 1969 (WHO ICD-10 G93.3).
• “Over the past 15 years, scientists have identified numerous biological abnormalities that provide evidence for the reality and seriousness of CFS, even though the cause of CFS and diagnostic tests for it are still unknown. These biological abnormalities have given researchers clues to the cause of the illness. In particular, they have provided evidence that the illness involves both the brain and the immune system.
(Professor Anthony Komaroff, Harvard Medical School, ME International, The Physical basis of Chronic Fatigue Syndrome.) See also, The Biology of CFS in The American Journal of Medicine, 2000, 108: 169-171).
• “The novel findings in this study are that patients with ME/CFS have significantly elevated levels of F2 isoprostanes alongside other key markers of oxidative stress and that these correlate with various ME/CFS symptoms.” Kennedy and Spence (2005) Oxidative stress levels are raised in CFS and are associated with clinical symptoms. Free Radical Biology and Medicine. 584-589.
• “Levels of serum acetyl-L-carnitine, immunological abnormalities, DHEA and its sulphate, cortisol, prolactin, ACTH, serum metals, oxidative stress markers, plasma-free trypophan and melatonin have been reported to be changed in ME/CFS.” Sakudo (2006) Spectropscopic diagnosis of CFS by visible and near-infrared spectroscopy in serum samples. Biomedical and Biophysical Research Communications. 345, 1513-1516.
• “Enterovirus VP1, RNA and non-cytopathic viruses were detected in the stomach biopsy specimens of CFS patients (82%) with chronic abdominal complaints. A significant subset of CFS patients may have a chronic, disseminated non-cytolytic form of enteroviral infection, which could be diagnosed by stomach biopsy.” Chia and Chia (2007). Journal of Clinical Pathology. 61, 43-48.
From the 8th International Association of CFS Conference, Florida January 2007:
• “70% of ME/CFS patients have low red blood cell volume” Hurwitz, University of Miami (2007).
• “The cardiac index of ME/CFS patients is so severe that it falls between the value of patients with myocardial infarction and those in shock.” Dr Paul Cheney, North Carolina, USA.
• “There are abnormally high levels of inflammatory markers that are significantly correlated with increased arterial stiffness.” Dr Vance Spence, University of Dundee.
• “ME/CFS patients have reduced blood flow to the brain and exercise exacerbates this reduced flow.” Kuratune, Japan
• “Increased levels of IL-6 correlate well with C-reactive protein and are proportionate to symptom severity in ME/CFS” Gurbaxani and Vernon, CDC, Atlanta.
• “In ME/CFS, there are three main abnormalities in gene expression studies: these involve the immune system, mitochondrial function and G-protein signalling. There are 7 genes upregulated in ME/CFS – those associated with apoptosis, pesticides, mitochondrial function, demyelination and viral binding sites.” Kerr, St Georges, London.
• “Mitochondrial degeneration was obvious in 40 (out of 50) muscle biopsies (from CFS patients) with swelling, vacuolation, myelin fibres and secondary lysosomes. These abnormalities were in obvious contrast to control biopsies, where even mild changes were rarely detected.” Behan, More and Behan (1991). Acta Neuropathology. 83: 61-65.
• “Studies of pathogenesis (of ME/CFS) have revealed immune system abnormalities and chronic immune activation, dysfunction of the hypothalamic-pituitary-adrenal (HPA) axis, brain abnormalities, evidence of emotional stress (comprising host aspects) and evidence of exogenous insults, for example, various microbial infections (Epstein-Barr virus, enteroviruses, parvovirus B19, coxiella burnetti and chlamydia pneumoniae), vaccinations and exposure to organophosphate chemicals and other toxins (comprising environmental aspects)” in patients with ME/CFS.” Devanur and Kerr (2006, p.139)
• Intracellular micro-organisms such as viruses and microbes have been found in ME/CFS patients including entero- and herpes viruses, paroviruses, mycoplasmas, chlamydiae, rickettsiae and borrelia bacteria. The identification of the dysfunctional form of the interferon-induced enzyme L-RNase in ME/CFS patients (Nijs and De Meirleir, 2005; Suhadolnik et al., 1994) provides evidence for am ongoing intracellular pathogen (Hooper, 2006).
• There have been 47 different epidemics of ME/CFS between 1934 and 1980. Information about which can be found in more than 200 papers summarised in the following paper: Parish T.S., Ohlsen, R.L., Parish, J.G. (1992). A bibliography of ME/CFS Epidemics. In Hyde BM, Goldstein J, Levine P. (Eds)., The Clinical and Scientific Basis of ME/CFS (pp176-186). The Nightingale Research Foundation.
I would be very grateful if you could provide a personal response to our request and look forward to hearing from you.
Yours faithfully,
. For the type of lung cancer that it is relevant to 60% of such patients will die unnecessarily or unnecessarily early. I take it you're happy with that.
