The *Hummingbirds' Foundation for Myalgic Encephalomyelitis* e-newsletter for Fe

[Guest guest]

Hello and welcome to the 'Hummingbirds' Foundation for Myalgic

Encephalomyelitis' e-newsletter for February 2010

 

We have one main new project to tell you about this month, two site

updates and a brief informal survey.

 

 

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A new paper is available: XMRV, 'CFS' and M.E. by Sarah Shenk

 

 

There has been much media publicity lately over a small research study

that claims to have made a connection between " CFS, " or " ME/CFS " , and a

retrovirus. While many are touting this as a huge medical breakthrough, or

even

claiming that 'our battle is over' there is a group of doctors, scientists,

patients and advocates who question why this research is being said to

apply to M.E., when the patients studied merely qualified for a 'CFS'

misdiagnosis and who view this information and the claims made about it with

tempered enthusiasm or even significant concern and worry.

 

 

Please read this brief paper to find out WHY. This page also includes a

new short paper entitled: Understanding M.E. and CFS - A Brief History.

 

 

Sarah Shenk is a severe M.E. patient (and patient advocate) from the USA.

This is the first solo paper she has written for the HFME, but hopefully

(health permitting) it will not be the last.

 

 

See: _http://www.hfme.org/xmrvcfsandme.htm_

(http://www.hfme.org/xmrvcfsandme.htm)

 

 

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New articles added to the 'Research and Articles' section this month

 

 

1. Magical Medicine: How to make a disease disappear by Professor Hooper

 

This is a very important paper, and a positive contribution. It is very

long but has at least been bookmarked allowing for easier reading of

sections. This paper is admirable; however a brief critique of definitions and

terminology is sadly necessary.

 

 

(HFME Critique: This paper includes an awful quote at the start about how

the recent XMRV research 'proves once and for all' that 'ME/CFS' is not a

psychological disease which reinforce some of the most harmful myths about

M.E. - namely that M.E. is the same as 'CFS,' that the mixed term ME/CFS is

useful or helpful in any way and that the reason patients are abused and

mistreated as mentally ill is due to a lack of evidence.

 

 

This is absolutely not the case, as Hooper himself has explained many

times over in the past - the problem is that evidence is ignored for political

reasons, not that it does not exist. Evidence that M.E. is a distinct

neurological disease has existed for many many decades now, although it is true

that we have no tests which can help diagnose 'CFS' but then we never will,

as 'CFS' does not exist as a distinct disease and as soon as serious

abnormalities are found on testing, one no longer qualifies for a 'CFS'

misdiagnosis.

 

 

The list of problems goes on; Klimas is NOT a M.E. expert, nor is Dr

Suzanne Vernon, they study 'CFS' or 'ME/CFS' and support many of the myths of

'CFS.'

The MEA are not a genuine M.E. advocacy group, nor are the NCF or the WA

ME/CFS society. CFIDS is another term for 'CFS' not M.E. A significant % of

the facts given here for 'ME/CFS' are of course about 'CFS' and not M.E. A

prime example is when it is claimed that bacterial infections, Ross River

virus and EBV can all cause 'ME/CFS' - yes they may cause a disease which can

be misdiagnosed as 'CFS' but these are absolutely NOT causes of genuine

M.E. Genuine M.E. experts have made this very clear.

 

 

It is really appalling that these obviously non-M.E. patient groups could

be described using any variation on the term M.E. You cannot simply take a

term already TAKEN by a distinct patient group, a distinct neurological

disease such as M.E. (as the WHO classification makes clear), and appropriate

it. It is unethical and unscientific, to say the least. These patients have

no more right to the term M.E. than to terms such as cancer, diabetes or

MS.

 

 

How can saying 'ME/CFS' is perfectly valid and criticising 'CFS/ME' make

the M.E. community look anything other than completely illogical! It's

crazy, they are the same thing. Wessely himself first started using such mixed

terms and they serve his interests well. ME/CFS and CFS/ME are just different

terms for 'CFS' - an artificial syndrome based on fatigue which describes

many different heterogeneous patient groups. 'ME/CFS' here just

seems to refer to any patients that qualify for a 'CFS' misdiagnosis and

aren't mentally ill.

 

 

Mixing M.E. and 'CFS' via the unhelpful term 'ME/CFS' just creates

confusion. This paper, as with Hooper's other excellent papers such as 'The

Mental

Health Movement' is wonderful and Hooper is a real super-hero for

patients...but what a shame so much of the clarity and basic logic of the

argument

is lost, and so much momentum and legitimate shock, by the fact that M.E.

has itself been unfairly and unhelpfully 'disappeared' here by Hooper, in

favour of the mix of two very different entities that is ME/CFS and

defending the concept of 'CFS' that has been so much the cause of our abuse and

mistreatment. As Hooper himself has said, we need real M.E. research and for

'CFS' to be abandoned if we are to get anywhere!

 

 

ME/CFS is NOT a distinct and classified neurological disease as claimed.

The WHO has no listing for 'ME/CFS' nor 'CFS/ME' and many different

definitions are also used for both terms. Real M.E. advocates and patients do

not

'take heart' from anything done by the useless, myth supporting IACFS/ME

group...or care much about the CDC 'CFS' program perhaps being slightly

improved!

 

 

The facts of M.E. and the bogus disease category of 'CFS' are so much more

compelling than confused information that is often contradictory about

'ME/CFS.' The point needs to be made more clearly that those with M.E. and

those who have improved via GET and CBT etc. and are used in most 'CFS' studies

are an entirely different and unrelated patient groups! Yes, bias is a

problem and political interests interfering in science, but so is the fact

that 'CFS' lets groups compare completely different patient groups as if they

were the same. Talking about 'ME/CFS' validates the 'CFS' model, as does

implying that all 'CFS' research has relevance to M.E. (as you do when you

place M.E. in brackets beside every mention of 'CFS' in a study) when this is

very much not the case.

 

 

It is also true that a significant percentage of those misdiagnosed with

'CFS' are mentally ill! Implying otherwise just confuses the issue further,

especially as there is a lot of proof that some of those diagnosed with

'CFS' are mentally ill. It makes it look like WE are twisting and selectively

viewing the science, instead of them!

 

 

For more information on these topics please see:

 

Who benefits from 'CFS' and 'ME/CFS'? at

 

_http://www.hfme.org/whobenefitsfromcfs.htm_

(http://www.hfme.org/whobenefitsfromcfs.htm)

 

A warning on 'CFS' and 'ME/CFS' research and advocacy at

 

_http://www.hfme.org/warningoncfsresearch.htm_

(http://www.hfme.org/warningoncfsresearch.htm)

 

Problems with the use of 'ME/CFS' by M.E. advocates at

 

_http://www.hfme.org/problemswithmecfs.htm_

(http://www.hfme.org/problemswithmecfs.htm)

 

 

The HFME fully supports (and participates in) advocacy efforts aimed at

helping all those non-M.E. patients misdiagnosed with 'CFS' be given the

appropriate support and treatment, and it also fully supports the hard work and

dedication and obvious compassion of Professor Hooper.

 

However, we cannot in any way support the unethical, illogical and

unscientific concept of 'ME/CFS' or claims that information on vague mixtures

of

'CFS' misdiagnosed patients relate to the distinct disease M.E., and vice

versa included in this paper. This counter-productive concept and medical

misinformation plays right into the hands of the unethical vested interest

groups involved and only helps entrench the confusion and our abuse and

neglect even further.

 

End of critique.)

 

 

Hopefully the target audience will see past these problems to the shocking

facts at hand, and even if they don't (the vested interest groups involved

are immensely powerful after all and huge sums of money are at stake)

three cheers for Hooper for working so hard to at least try to achieve justice

for patients. This is so necessary and so it is very much appreciated.

 

See:

_http://www.hfme.org/whooper.htm_ (http://www.hfme.org/whooper.htm)

 

We desperately need many more dedicated and compassionate doctors willing

to fight in an uncompromising way for patients rights!

 

 

 

2. 20 Facts about being a Carer for someone with severe M.E. by Greg and

Linda Crowhurt

 

See: _http://www.hfme.org/wcrowhurst.htm_

(http://www.hfme.org/wcrowhurst.htm)

 

 

 

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A very minor M.E. survery

 

 

If you have the time and ability, you may wish to participate in some very

minor and informal M.E. research by answering the following question:

 

 

'Have you ever had, since having M.E., black (or v dark brown) lines on

your fingernails, so it looks as if you have black splinters trapped under

your nails (going down the nail). Can be so thin as to be very faint or almost

1mm thick. They often come and go.'

 

 

This is a very minor but perhaps interesting sign of M.E. (Black lines

under the nail resembling splinters can be a sign of infectious cardosis (a

serious heart infection) other heart disease or a bleeding disorder. M.E.

seems likely to qualify here as 'other heart disease' as this finding seems

quite common in M.E. patients.)

 

 

Responses can be sent via email, the HFME Guestbook or the HFME Facebook

page.

 

 

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Ongoing HFME projects

 

 

1. The Hummingbirds' Foundation for M.E. is setting up two new memorial

pages. One for M.E. patients and one for all those patients misdiagnosed with

'CFS' who have diseases other than M.E. If you would like a friend or

family member to be included in this memorial list, please see the HFME

memorial lists page at _http://www.hfme.org/mememoriallist.htm_

(http://www.hfme.org/mememoriallist.htm)

 

 

2. Donate 'free' money to M.E. advocacy if you are a new customer at the

iHerb or VRP online supplement and vitamin shops. For more information

please see: _http://www.hfme.org/donatetohfme.htm_

(http://www.hfme.org/donatetohfme.htm)

 

 

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That's it for this month.

 

All the best from all of us, until next month,

 

Jodi Bassett (and the HFME team)

 

 

 

 

--

 

 

This month's quotes:

 

 

M.E. is not caused by the Epstein Barr virus: The Lake Tahoe epidemic that

started in August 1984 also started amongst students. In this case the

epidemic began in a high school girls' basketball team that was travelling in a

bus to play various other teams. The epidemic spread rapidly with an

incubation period of approximately a week. As in many of the other epidemics,

it

then spread to the general community. After the epidemic started it then

involved three high schools, both students and teachers and ultimately

spread to the community. For some reason it was considered to be an epidemic of

infectious mononucleosis. This is an illness caused by a virus Epstein Barr

Syndrome. Associating the Lake Tahoe epidemic with Epstein Barr Syndrome

was frankly ridiculous and you will see why almost immediately. Anyone who

realizes that infectious mononucleosis is caused by the herpes family virus,

Epstein Barr Virus (EBV), and that the incubation period of this illness

is approximately 40 days, should have realized that you simply cannot have a

rapidly spreading viral epidemic with a virus with a latent period of 40

days. Neither Dr Straus nor Dr Holmes, senior government physicians, should

have fallen into such a trap. They only had to go to the excellent CDC

library to realize that rather than spending half a million dollars or so on a

publication that they should have known would not have incriminated EBV.

Yet this epidemic somehow spread the myth that this illness was caused by

EBV. Today, as I write this short history of M.E. the vast majority of

physicians and the public still associate Epstein Barr Virus with [M.E.]. Such

is

the perseverance of error.

Dr Hyde MD

 

 

Were these epidemics that I have spoken about cases of Myalgic

Encephalomyelitis?

They were. I have personally visited all of these cases except for the

Cumberland epidemic and Wallis left us such a good description of that epidemic

that there can be no doubt. I have personally gone to Los Angeles and

examined patients from the Los Angeles epidemic. I have gone to Iceland and

examined patients from the Akureyri epidemic. I have examined patients from

the Royal Free Hospital epidemics, from the Newcastle sporadic illnesses.

Many are the same or similar and many of them had been rejected or shunned

because they were not true poliomyelitis. However they were all cases of

Myalgic Encephalomyelitis.

Byron Hyde MD

 

 

M.E. is a systemic disease (initiated by a virus infection) with multi

system involvement characterised by central nervous system dysfunction which

causes a breakdown in bodily homoeostasis (The brain can no longer receive,

store or act upon information which enables it to control vital body

functions, cognitive, hormonal, cardiovascular, autonomic and sensory nerve

communication, digestive, visual auditory balance, appreciation of space, shape

etc). It has an UNIQUE Neuro-hormonal profile.

Dr Elizabeth Dowsett

 

 

M.E. is a clearly defined disease process. CFS by definition has always

been a syndrome.

Dr Hyde MD

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