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

[Guest guest]

**HFME press release**:

International M.E. expert disputes that 'CFS' XMRV

retrovirus claim has relevance to M.E. patients

www.hfme.org/xmrvpressrelease.htm

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, Canberra,

Sydney, Brisbane 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 .

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 are 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.'

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[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 .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

View this press release online:

www.hfme.org/xmrvpressrelease.htm

Email: contact@...

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 – Thurs Sept 16.

General public seminar: Sat Sept 18

Brisbane: Tues Sept 14

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.

The Hummingbirds' Foundation

for Myalgic Encephalomyelitis:

www.hfme.org

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Myalgic Encephalomyelitis is a clearly defined disease process. CFS by

definition has always been a syndrome. M.E. and CFS are not the same.

Dr Byron Hyde 2006