Reject the imperial name change before its too late!
Response to the ProHealth Name
Change Committee and the IACFS:
A very small group of American "World Class Experts" are not representative of all the international experts, many of whom who studied the disease ME long before the CDC attempted to obscure it by creating the misnomer CFS in 1988 and the broadly defined criteria that excluded the cardinal features of Myalgic Encephalomyelitis, which had been known as Atypical Poliomyelitis prior to 1956 due to the similarities with Poliomyelitis. The proposed name change is another dangerous mistake like CFS that is not supported by international scientific consensus and must be stopped to prevent a repeat of the last 20 years of confusion.
A recent editorial states: "'ME' has historically been used to describe 'Myalgic Encephalomyelitis' (nervous system inflammation involving muscle pain) - a term that does not accurately describe the disease process in all patients." That misses the crucial point that they have been studying broadly defined CFS patients and not strictly defined ME patients - this false assertion can only be a calculated gamble that patients will fall for such propaganda! In a further editorial it states: "Patients will have the opportunity to hear all sides of the argument and will ultimately make the decision: Is ME/CFS better than CFS? And which 'ME' is better - the one that has been used for 60 years, or the one that is more medically accurate and up to date?" We may suffer from brainfog but most of us are intelligent enough to recognise this manipulative trick.
In an IACFS conference report by Dr Charles Lapp, he notes that the organization has changed its name to IACFS/ME(opathy) and: "an ad hoc Name Change Committee, put together by ProHealth CEO Rich Carson, also recommended using the term ME (Myalgic Encephalopathy) in lieu of CFS. CFS will probably remain the scientific term for the illness, but it is hoped that ME will become the common designation." So the committee has already indicated the predetermined outcome of the final decision, and CFS with its vague criteria and associated stigma will strangely remain the "scientific term for the illness"? This bizarre logic is baffling and will not put an end to the controversy and disbelief that have caused patients so much distress.
Myalgic Encephalopathy is open to psychiatric interpretation as it is not coded in any WHO classification, and the CDC/Fukuda/Holmes based CFS criteria include psychiatric patients, in fact anyone with fatigue! The IACFS Conferences still give far too much preference to fatigue and behavioural studies, and the highly inappropriate CBT/GET research. Fatigue is not a disease, it is a symptom of all chronic illnesses and exercise is only gradually commenced after successful treatment, not as a misguided substitute! The evidence for mitochondrial dysfunction and exercise intolerance is not in doubt so why are these psychiatric studies still getting funding and taking up valuable time and space at a medical conference?
It is apparent that the name change committee does not wish to look beyond the distorted findings of these heterogenous CFS studies which inevitably produce inconclusive results, so who do they really represent? They will not consider the mounting evidence from independent unbiased researchers and the conclusions from
autopsies that do confirm CNS inflammation and vasculitis, while referencing the history of the coinciding epidemics of ME and Poliomyelitis that began in 1934, the later discovery of 69 related polio and non-polio enteroviruses, and the current evidence of damage to the Rnase L anti-viral pathway.
The experts who first named the disease Myalgic Encephalomyelitis some 50 years ago did so based on all the evidence at the time including autopsies which demonstrated inflammation of the spinal cord, and this has been confirmed again as recently as 2006 in a horrifying case of medical neglect and psychiatric abuse in the UK, while in the US an autopsy on a young man revealed viral inflammation of the heart! How many more lives will it take? Why do politics dictate medical inquiry? ME researchers have been forced to use the name CFS and its definitions to have their studies published in peer-reviewed medical journals, and this unethical situation will continue to waste more precious money on predictably inconclusive research results.
Could it be that other countries got it right long before the Americans did and that is why they do not want to recognise the 1956 UK naming of ME, the 1969 WHO classification, and the 2003 Canadian Consensus Definition which uses the interim term ME/CFS as recognition and use of the historical name has increasingly gained in
popularity? Only in America has CFS (and CFIDS) been so dominant. But it is more likely that the usual conflicts of interest - protecting the health and insurance industries, and of course the psychiatric proponents of CFS are once again getting more priority
than the welfare of patients. The current narrowly focused CDC-funded CFS Awareness Campaign suggests that possibility.
The CDC might list CFS as a Priority 1 Disease of Public Health Importance but has spectacularly failed to inform anyone of the risks. Considering the widespread misunderstandings associated with the name CFS, a more comprehensive ME Awareness Campaign with information on the history and epidemic nature of the disease could have done much to dispel the erroneous notion that it is some new fatiguing illness that can amazingly be cured by positive thinking and exercise. Emphasis on the Canadian Consensus Guidelines and the recommended and verifiable diagnostic tests should have been foremost - it is equally important that a diagnosis of other serious conditions is not missed. This is, indeed, a matter of life and death.
It appears that the ad hoc name change committee will not be consulting all the recognised world experts for their views about renaming Myalgic Encephalomyelitis as they initially promised. It is unlikely that there would be consensus agreement to a less specific name with seriously flawed criteria and the use of CFS as the research term , when the historically established and WHO classified name is now supported by the internationally acclaimed Canadian definition, and the science supports the inflammatory aspects of the disease. ME does not need renaming - it must be reinstated as the only medically justified term for the disease at this time - and CFS must be abandoned if respect and funding are the priority.
Can we afford to lose the historical WHO classification and evidence for Myalgic Encephalomyelitis since 1969? In two years time that amounts to 40 years of history and research that is of great importance to researchers and patients. Myalgic Encephalomyelitis has officially existed for 50 years and together with its previous name Atypical Poliomyelitis provides a continuous historical record of the illness spanning a staggering 70 year period. The only other justified change at this point would be to remove the word "benign" from the WHO-ICD, and the public rightfully alerted to this most pertinent fact.
Will the rest of the world take the risk of losing ME s official WHO coding when the established name has medical and historical legitimacy and is widely used internationally despite the efforts of CFS campaigners? Will the psychiatric lobby profess their support for the alleged scientific value of Encephalopathy and then seize on the interpretation of "brain abnormal state" to renew their persecution of patients? If CFS is to remain the scientific term then patients are at serious risk of further interference by the psychiatric lobby who have caused serious damage to many patients by meddling in an area outside their remit.
We can also be justifiably wary of this name change at a time when major funding is still not being allocated to medical research! ME, and its variants/possible subgroups Fibromyalgia, Chronic Lyme Disease and Gulf War Syndrome, are the most common chronic and disabling illnesses in developed countries, so why is research not being funded on a scale commensurate with other disabling neurological diseases?
The IACFS should be taking a much stronger stand on the medical evidence and barring the psychiatric lobby's totally irresponsible participation. If this is a genuinely international association, they should demonstrate their credibility to patients everywhere by calling it the IAME (Encephalomyelitis) and adopting the 2003 Canadian Consensus Guidelines for ME/CFS without reservation. The intention was that CFS would be discarded when Myalgic Encephalomyelitis is restored to its rightful place and the guidelines updated. Wasn't that the whole point of this exercise - to get rid of the CFS stigma permanently?
Please read the "Top 10 Reasons for Myalgic Encephalomyelitis" by The National Association for Myalgic Encephalomyelitis; "Redefinitions Of ME/CFS A 20th Century Phenomenon" by Dr Elizabeth Dowsett at M.E. International; "Restore M.E." by Judith
Silverman at R.E.S.C.I.N.D.; and relevant articles by important organizations such as Invest in M.E., ME Research UK, The M.E. Society of America, The Committee for Justice and Recognition of M.E., and The Nightingale Research Foundation in Canada - information you will not find in a government supported campaign.
If a hundred organizations like these were to converge and act as one to create a powerful international ME Campaign we could attract the major funding urgently needed for biomedical research that has been shamefully neglected by governments - a campaign for long overdue justice and recognition.
It is time we stopped debating the long established name and instead focus our attention on restoring the basic human rights of patients by securing major funding for intensive medical research, educating the medical profession, and delivering long overdue treatment. It is time we were heard.
We cannot afford to have another damaging name imposed on us again - we must act now!
John Anderson
via Co-Cure