The HFME e-newsletter - November 2009 [Hummingbirds Foundation for Myalgic Encep

[Guest guest]

Hello and welcome to the 'Hummingbirds' Foundation for Myalgic

Encephalomyelitis' e-newsletter for November 2009

 

We have a few new projects and events to tell you about this month.

 

This month there is a new HFME paper, and another paper has been updated.

There are three new translations of HFME papers into Danish and several

new

hummingbird prints available for sale with 30 - 50% of sales being donated

towards M.E. advocacy (split between the HFME and Dr Hyde's Nightingale

Research Foundation). The format of this newsletter has been slightly

changed this month too to enable some images to be included.

 

The HFME website (formerly the HGME website) also marks its fifth year this

month.

 

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A new paper is available: 'Why care about M.E.?' by Jodi Bassett and

co-authored by Lesley Ben.

 

If you aren't personally affected as yet, why should you care about Myalgic

Encephalomyelitis and want to help patients achieve the same basic rights

as

those with similar neurological diseases such as Multiple Sclerosis? Why

should you care about whether or not the fictional disease category of

'CFS'

is abandoned?

 

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

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

 

 

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Updates

 

1. The 'Tips for coping emotionally with M.E.' paper has been updated.

 

Comments by several group members on coping with M.E. have been added.

 

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

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

 

 

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New translations

 

The comprehensive M.E. symptom list, What is M.E.? - Summary, and A

one-page

summary of the facts of M.E. have now been translated into Danish. The HFME

is very grateful to Joan Steen for all her very hard work.

 

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

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

 

If you are able to offer your services as a translator, please contact the

HFME. Factual information on M.E. is urgently needed in as many different

languages as possible.

 

 

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New hummingbird art prints available with 30 - 50% of proceeds being

donated

to M.E. advocacy

 

There is one new individual hummingbird print in green black, one three

hummingbird print set in green black, and several small hummingbird

paintings by Jodi Bassett.

 

30 - 50% of the purchase price on each item will be donated towards M.E.

advocacy (split evenly between the HFME and Dr Hyde's Nightingale Research

Foundation). Prices start at $21 and postage is free worldwide.

 

See: _http://www.ahummingbirdsguide.com/hummingbirdgallery.htm_

(http://www.ahummingbirdsguide.com/hummingbirdgallery.htm)

 

 

 

 

 

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The HFME website turns five this month!

 

This month the HFME website, formerly the HGME website, turns five.

 

The HFME would like to sincerely thank everyone who has contributed to the

site over the years, often with great difficulty due to disability and at

significant physical cost. The site would not be what it is without your

contributions of case studies, patient accounts of CBT and GET, Guestbook

entries, suggestions for new site features and ways to improve the site,

emails of overwhelming support, encouragement and solidarity, and so on.

 

Every contribution helps, big or small. Please keep them coming!

 

 

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A change to the format of this newsletter for November

 

Previously this newsletter has been sent in plain text format. This month,

for the first time, it is being sent in a (plain text styled) HTML format.

The look is almost the same except some colour and images have been added.

 

There should be no loss of readability with this format change, nor loss of

disability friendly features. If you have any problems with this new format

however, please let the HFME know. Making this newsletter as user-friendly

as possible for those who are ill is our primary concern.

 

(Note that you may need to click on 'view this message in HTML' to view the

images if your email program is set to view all emails automatically in

plain text. Images may also not be available if you have received this

email

as a plain text email forward.)

 

 

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Ongoing HFME projects

 

1. M.E. case studies wanted. If your case study isn't already featured on

the HFME site we hope you'll consider writing one - even two or three or

four paragraphs would be fine. For more information please see:

_http://www.hfme.org/newsletterextras.htm#454663978_

(http://www.hfme.org/newsletterextras.htm#454663978)

 

 

2. 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)

 

 

3. 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.

 

As this may or may not be the final HFME newsletter for the year, we'd like

to take this opportunity to wish all of you all the best with your health,

and your relationships with friends and family over the holiday season.

 

All the best from all of us, and happy holidays (as much as possible at

least), until next month,

 

Jodi Bassett (and the HFME team)

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From someone with very severe M.E., on how sometimes occasionally with M.E.

you can do things you couldn't normally do for short periods, but only at

enormous and long term physical cost: " i try to xplain this one in terms of

money ok, yoiu could buy a ferrari, coulnd't you? no, i don't have the

money. oh, but you could borrow lots of money, sell your house, take up

dealing drugs, gamble, and in the end you'd have your ferrari... <blank

look> maybe for a day or so, before the loan sharks shoot your kneecaps

off,

and the gangs blackmail you, and you have to find a way to rerpay all that

money... could take you a lifetime <rather frightened look> ...yeah. you

get

the point "

 

" I am frustrated by uneducated and complacent doctors who would probably

concede that they should not treat brain tumors etc. because they don't

have

the adequate knowledge to do so, but who strangely enough think it is okay

to 'treat' M.E. Too many doctors think that there is no harm done if they

dabble in this disease without having any prerequisite knowledge.

If you're not an expert and you want to treat an M.E. patient, at least

have the courtesy to educate yourself on the disease first- otherwise refer

the patient to someone who IS educated on the disease for treatment. If we

want support and someone to JUST listen to us, we can see a counsellor,

talk

to a friend etc. If we want treatment and medical advice we see a doctor.

We all " hope " to get better. But " hope " cannot be a substitute for good

medical treatment. Hope alone won't find a cure or new treatments for M.E.-

such situations demand that the professional (i.e. the teacher, doctor-

whatever the case me be) actually DO SOMETHING. I don't think it's

unreasonable that we expect more from the doctors who are treating us. I

don't think it's unreasonable to expect that the advice and treatment

offered to us is based on sound, reputed and informed medical advice. If we

don't expect and demand more for this disease then who will? " Brooke

Rodgers

 

" The term " Myalgic encephalomyelitis " (ME) was henceforth used in the UK,

Canada and Australasia to define an illness which, following a virus

infection, leads to multisystem involvement of cardiac and skeletal muscle,

liver, lymphoid and endocrine organs but which is primarily due to central

nervous system dysfunction and subsequent breakdown in bodily homoeostasis.

Confirmation of this hypothesis was supported by electrical tests of muscle

and of brain function (including the subsequent development of PET and

SPECT

scans) and by biochemical and hormonal assays. " Research into ME 1988 -

1998

Too much PHILOSOPHY and too little BASIC SCIENCE! by Dr Elizabeth Dowsett

 

" We encourage patients to learn about ME, its history and the epidemics and

the modern research. Do not be confused by the deceitful propaganda about a

" new disease " . No CFS definition defines a neurological disease. All

definitions which wear the 'f' word (ie. fatigue) in their name are not ME

nor neurological. They are definitions of fatigue conditions. And when

these

definitions were written it was not neurological ME which they were

attempting to define.' The Committee for Justice and Recognition of Myalgic

Encephalomyelitis

 

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