Some people believe that Myalgic Encephalomyelitis (ME) and CFS (Chronic Fatigue Syndrome) are the same illness. What do you think? Keep reading to find out more about this fascinating subject.
Dr. Bryron Hyde, a long-respected doctor and researcher on ME, is about to tour Australia.
Here is the broadcast announcement about his visit and a beginning discussion of this topic. Hint… hint… Dr. Hyde says ME is NOT CFS and why:
**PRESS RELEASE**
www.hfme.org/xmrvpressrelease.htm
World-renowned Myalgic Encephalomyelitis expert, Dr. Byron Hyde, about to undertake 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.’
[1] human retrovirus xenotropic murine leukemia virus-related virus
[2] Statement made by Dr. Hyde at Swedish M.E. Conference in Goteborg, Nov 2009. http://www.nightingale.ca/documents/GoteborgConference.pdf p.7.
[3] http://www.nightingale.ca/index.php?target=whatis
[4] HFME XMRV discussion paper: http://www.hfme.org/xmrvcfsandme.htm
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Media contact information:
Website: www.hfme.org
Email: contact@hfme.org
Phone: (May be unavailable at times due to illness)
Bea 03 62235453
Ginny 0423 521 501
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The HFME is dedicated to fighting for the recognition of Myalgic Encephalomyelitis based on the available scientific evidence, and for patients worldwide to be treated appropriately and accorded the same basic human rights as those with similar disabling and potentially fatal neurological diseases such as Multiple Sclerosis.
Myalgic Encephalomyelitis (M.E.) is a debilitating neurological disease which has been recognised by the World Health Organisation (WHO) since 1969 as a distinct neurological disorder. M.E. is classified in the current WHO International Classification of Diseases with the neurological code G.93.3.
It can occur in both epidemic and sporadic forms. Over 60 outbreaks of M.E. have been recorded worldwide since 1934.
What defines M.E. is a specific type of acquired damage to the brain (the central nervous system) caused by a an enterovirus. It has multi-system involvement which is characterised by post- encephalitic damage to the brain stem; a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions – this is always damaged in M.E. (Hence the name ‘Myalgic Encephalomyelitis’).
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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]
Melbourne: medical practitioners – Sept 16.
General public seminar: 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.
Jodi Bassett, The Hummingbirds’ Foundation for Myalgic Encephalomyelitis:
www.hfme.org
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Thanks so much for visiting the Health Matters Show blog and podcast. Please spread the word about Dr. Byron Hyde and his upcoming visit via Facebook and Twitter. Your comments here are very welcomed, too. Be sure to tell us if you’re planning on hearing his presentation in one of the locations and/or if new locations become available. Thanks!
Your host here, Cinda Crawford
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happycatuk 09.09.10 at 9:26 am
So .. how do you know which one you’ve got? Is there a definitive test that doesn’t involve perhaps a CAT scan, and that your GP would be willing to put someone forward for? I always say I have CFS as I hate talking about ‘me’ (which is how saying ME always feels), but have the whole range of symptoms that indicate possible parasympathetic nervous system issues…
Cinda Crawford 09.09.10 at 2:49 pm
I can’t tell you the difference. I would suggest something like making a list of your symptoms, then do your research to see which ones apply where. If you’re in the US, most docs aren’t familiar with CFS. Chances are you may have a mixed bag of symptoms, but people with ME or who diagnose ME do often think of it as a separate illness than CFS. Enter=>> Dr. Byron Hyde.
happycatuk 09.11.10 at 5:01 pm
Ah, that’s what I thought, and which is why I use BOTH terms to describe what I’ve got – though a breakdown of the term ME indicates a particular physiological change in the brain (details of which I’m too brain-fogged to remember or spell, lol, something about a specific inflammation???)
Gayle 09.17.10 at 3:31 am
I have M.E. And I have XMRV. I have seizures , endocrine challenges , heart problems, a lesion on my brain, nausea , vomiting and other complications. . I live in the USA unfortunately it’s named CFS. I call it ME/CFS I hope one day to drop the CFS completely . Dr. Hyde cannot possibly know the incubation period as no one knows in humans . Dr. Hyde is wrong about the WPI and I wholeheartedly support them . I’ve been on antiretroviral treatment since February.
Cinda Crawford 09.17.10 at 10:31 am
Dear Gayle, thank you for such a clear picture about what is going on with you. You’ve got this down to your personal science and, surely, that is what everyone will have to do before all of this is over. I met Dr. Byron Hyde about 20 years ago. He is a passionate man and scientist. I am sure he believes in his life’s work, but so do scientists such as the ones at WPI. I think what you, I and everyone else on the sidelines has to hope for is that the information becomes clear enough that there is more of a meeting of these great minds. The recent report by NCBI should go a long way to clarifying everything. I find it encouraging that “real” research is finally being done! Please keep in touch~~ thanks again, Cinda
Roshe 09.25.10 at 10:10 am
I find the whole argument of nomenclature in this disease (ie. M.E. vs CFS vs CFIDS) to be circular and not very constructive at all.
To the actual patients in most cases who have been given one of these diagnoses by a health professional, the underlying pathology is much the same; depending on where you live, will depend on the label.
Hopefully people with the M.E. ‘label’ will not be so pigheaded and self righteous as to NOT be tested for XMRV/MLv’s once an accurate test is available. It would be a pity if dogmatic arguments (which are not strong in my opinion) such as that expounded by Jodi Bassett deterred people from being tested.
Roshe 09.25.10 at 10:36 am
To clarify: I have no problem agreeing that M.E. is the correct diagnostic term but definitely do not cast off as illegitimate those who have been given the CFS/CFIDS or even Fibromyalgia label when they exhibit the full contingency of neurological/immunological/endocrinological symptoms as present in M.E..
Erik Johnson 04.02.11 at 10:02 pm
All Dr Hyde is saying is that ME and CFS are not synonymous terms… because the Holmes committee “Hijacked” the proceedings and created a bad definition to describe.. in his own words, “a typical outbreak of ME”.
CFSers had to fight on despite the name, and slamming them by implying that the ILLNESS is bogus… is literally stepping into the shoes of the CDC and speaking their own words of denial.
Why can’t people be HONEST and just say, as Byron Hyde did, that due to the considerable conceptual and definitional differences, CFS should not automatically be considered to be ME, but where the two overlap, they are the same illness?
It’s not that tough to figure out a way to NOT slam innocent CFS patients who had no control over the name this illness was given.
Cinda Crawford 04.03.11 at 4:19 pm
Well, I can’t speak for Dr. Hyde, but my common sense tells me that are differences between all of these illnesses, but… they probably are all related in the end. The “sorting out” is the challenge and so far there is no driving force towards that needed and noble end. I believe that whether people take offense at a name or reference may speak more towards their internal attitude about being so ill for so long. The average person means no harm in using one term or another, but scientist, doctors, health care powers-to-be… now they “could” have an agenda. I’m feel sure that many do! Thanks for your wonderful comment. Come back anytime to blog to add your thoughts~~ Cinda