The Hummingbirds' Foundation for M.E.

HFME press release: International M.E. expert disputes that 'CFS' XMRV retrovirus claim has relevance to M.E. patients, September 7th 2010.

Click here to download a copy of this press release in PDF format.

**PRESS RELEASE**

World-renowned Myalgic Encephalomyelitis expert, Dr Byron Hyde, currently undertaking a speaking tour of Australia, has made the following statement about mistaking the research done so far on the hyped XMRV[1] retrovirus and 'Chronic Fatigue Syndrome' (CFS) patients with evidence of any relationship to M.E.:

In four of the sixty M.E. epidemics an enterovirus was recovered. In over 50 other [M.E.] epidemics, no virus was recovered but the average incubation period of the infection in these epidemics was 3-6 days, as it is in all enterovirus infections. However, the "incubation period of [the not enterovirus, but retrovirus] XMRV is up to 21 days which makes it impossible to cause an epidemic illness. [2]

Dr Hyde will speak in several Australian cities, including Melbourne, Sydney and Perth, in September 2010.

Dr Hyde is uniquely qualified to speak on M.E., having investigated M.E. for many decades, including the M.E. epidemics in Australia, Iceland, the USA, New Zealand and the UK. Dr Hyde's comments also fit with evidence from the other leading M.E. experts with decades of experience with the disease such as Dr Dowsett, Dr Ramsay and Dr Richardson.

Dr Hyde has also worked on debunking the relatively recent notion that "Chronic Fatigue Syndrome" (a bogus or 'wastebasket' disease category invented in 1988), or the related "CFIDS" and "ME/CFS" concepts, are synonymous with M.E. WHO ICD-10:

M.E. has a clearly defined disease process while CFS by definition has always been a syndrome... The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state. Where the one essential characteristic of M.E. is acquired Central Nervous System (CNS) dysfunction, that of CFS is primarily chronic fatigue.[3]

HFME founder Jodi Bassett commented:

The forthcoming visit to Australia by the world's most authoritative spokesperson on Myalgic Encephalomyelitis is an excellent chance for us to assess what kind of fundraising  and research initiatives can make a significant difference for all those touched by M.E.  It can help debunk the harmful conflation of M.E. with "CFS" that results in many patients and their supporters devoting vital energies and resources to much-hyped but inappropriate treatments and so-called 'advocacy' campaigns which not in the best interests of M.E. patients, and can be harmful to M.E. patients.

Dr Hyde's experience gives him a unique insight into what is needed now for M.E. and into the deficiencies with current claims about XMRV research indicating a future treatment or prevention model for M.E.

Claims that the XMRV virus has been shown to be the cause of M.E. or that this test is useful in diagnosing M.E. are false, misleading and unethical. Research done on patients with a wide variety of diseases involving fatigue and/or immune problems, and discussed under the "CFS" banner, usually has nothing to do with M.E., and the much-hyped and very slickly promoted XMRV research is, based on all of the evidence produced thus far, just another such example[4].  

M.E. is a distinct neurological disease. 'CFS' is always a MISdiagnosis. M.E. and 'CFS' are not the same. Vague 'CFS' research which uses heterogeneous (mixed) patient groups must stop being wrongly and unscientifically applied to those with the distinct neurological disease M.E.

Dr Hyde's Australian speaking engagements yet to occur include [but are not limited to] the following dates:

Perth: Sat Sept 11 [medical practitioner seminar followed by public seminar]
Brisbane: Tues Sept 14
Melbourne: medical practitioners – Thurs Sept 16.
General public seminar: Sat Sept 18

For information on any of Dr Hyde's excellent books or articles on M.E., see the Dr Byron Hyde page on the HFME website.

• For more information on why 'CFS' and M.E. are not the same see: XMRV, 'CFS' and M.E. and A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy 
• For more information on why every diagnosis of 'CFS' is a misdiagnosis, see: The misdiagnosis of CFS and Where to after a 'CFS' (mis)diagnosis? and Why the fictional disease category of ‘CFS’ must be abandoned
• For more information on the series of tests that can be used to diagnose M.E. see: Testing for M.E.  and Are we just 'marking time?'
• For more information on all aspects of M.E. please see: What is M.E.? 

Note that HFME do not recommend that patients buy the (very expensive) XMRV tests that are available. A positive result on this test is virtually meaningless. It does not prove that a person has M.E. (or any other distinct disease), that their disease is caused by or worsened by the XMRV virus nor that anti-retroviral drugs will necessarily be helpful or even able to be tolerated. There are many other far more useful tests for M.E. available, and many of them are far less expensive.

For example, tests for natural killer cells (percentage and function) will be abnormal in almost all patients and this test is one of the tests that can be used to confirm a suspected M.E. diagnosis (and to prove illness generally). Another blood test that can be used for this function is the ESR test. There is also the tilt table test (or the 'poor man's tilt table test' which can be done by your doctor, or even at home using your own blood pressure monitor), the holter monitor (a type of heart monitor), impedence cardiography and of course SPECT and MRI brain scans. Scientifically, M.E. can be tested for to a high degree of certainty RIGHT NOW, using a series of objective tests. If all tests are normal, a diagnosis of M.E. cannot be correct.

Even where a M.E. patient's medical care is very poor and privately purchased tests are the only testing option (as is common), there are many far better choices than an XMRV test, see Treating M.E. - The basics  for details.

What can you do as a patient to help promote genuine M.E. advocacy?

a. Do not make or spread false claims about XMRV being 'proven' to cause M.E., and so on. Direct those who do make such misleading and incorrect claims to accurate information on M.E. from Dr Hyde and other M.E. experts. Politely point out that the outrageous claims of 'cures' and 'we have proof that XMRV causes M.E. and soon we will have a treatment and this will all be over' by groups and individuals is vastly different to what has actually been proven in the available 'CFS' XMRV research.

b. Please continue to do all you can to get the tests you need and to persue what treatment options exist. Do not passively wait for the 'cure' promised by some XMRV groups.

c. Continue to do all you can to participate in genuine M.E. advocacy. This new 'CFS' research is not only NOT a huge step forward, it may easily make things even worse for patients by more strongly promoting the flawed concept of 'CFS' being the same as M.E., and M.E. supposedly being 'medically unexplained' up until recently.

d. Remember that 'CFS' and 'ME/CFS' advocacy is not the same as M.E. advocacy and most often has very different goals, and a very different grasp of the facts. Unlike 'CFS,' M.E. has been validated scientifically for many decades. What M.E. patients need is not a new vague test (M.E. patients already have more than a dozen reputable tests based on solid science), but for M.E. to finally be separated out from 'CFS' and for genuine M.E. research to again be conducted and for information on M.E. to again be taught in medical schools, and so on. For M.E. patients to again be treated no differently to those with similar diseases, such as MS. This change will only come with genuine and intelligent political action. If it were merely about science, the M.E. battle would already be over! 

The reality is that M.E. patients have always had the science and evidence on their side, but have faced enormous opposition by political and financial vested interest groups which benefit from hiding M.E. in plain sight, under cover of the bogus disease category of 'CFS.' The overwhelming majority of those misdiagnosed with 'CFS' do NOT have M.E. 'CFS' is NOT just another term for M.E.

The patient population diagnosed with ‘CFS’ is made up of people with a vast array of unrelated illnesses, or with no detectable illness. However, while 'CFS' is not a genuine diagnosis, those given this misdiagnosis are in many cases significantly or even severely ill and disabled. 'CFS' is made up of people with cancer, MS, Lyme disease, depression and hundreds of other unrelated conditions. The problem is not that ‘CFS’ patients are being mistreated as psychiatric patients; some of those patients misdiagnosed with CFS actually do have psychological illnesses. There is no such distinct disease/s as ‘CFS’ – that is the entire issue.

Campaigns trying to legitimise or subgroup or rename 'CFS' (or promote unscinetific concepts such as 'ME/CFS') or that try to claim that 'CFS' is M.E. are not helpful for M.E. patients, nor any other distinct patient group. The bogus disease category of 'CFS' must be abandoned, for the benefit of all patient groups involved.  Correct diagnosis is vital in obtaining the correct treatment.