A Hummingbirds Guide to ME Newsletter - April/May 2008

[Guest guest]

Hello and welcome to the 'A Hummingbirds Guide to Myalgic Encephalomyelitis'

e-newsletter for April/May 2008

 

I hope this newsletter finds you and yours doing as well as possible.

 

I have two big new projects to tell you about this month.

 

-----

 

A new paper is available: Hospital (or carer) notes for M.E.

 

Patients with Myalgic Encephalomyelitis have a variety of specific care

needs, some of which are well-known and common to a variety of other illnesses

and others which are unique to M.E. and with which hospital staff or carers may

be wholly unfamiliar.

 

Inappropriate care (even if well intentioned) can have serious consequences

for M.E. patients in the short term and the long term, or even permanently.

Knowledge of some of the basics about how M.E. affects the body is vital if

you are in the position of providing care for someone with M.E. in order to

avoid additional unnecessary suffering and disability.

 

This paper provides general information on how to appropriately care for

M.E. patients for carers and hospital staff. An optional form is also provided

that M.E. patients can print and fill out to give carers more information

about their illness, where appropriate.

 

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

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

 

I've had a lot of requests for a paper like this over the years, and finally

it is here! (Prompted primarily by the fact that several of my M.E. friends

are facing surgery or other hospital trips of some sort, or are now

recovering from such. All the best to S, C, S, J and M.)

 

As always, constructive criticism and suggestions are welcome - and thank

you to everyone who has offered valauble feedback on this paper so far.

 

-----

 

A new paper is (finally!) available: Problems with the so-called " Fair name "

campaign:

 

Why it is in the best interests of all patient groups involved to reject and

strongly oppose this misleading and counter-productive proposal to rename

'CFS' as 'ME/CFS'

 

At first glance the idea that the name 'CFS' is the cause of so much harm

and misunderstanding seems so obvious as to not even merit further discussion.

It seems so logical that one of the first things that patients given this

diagnosis must do is campaign hard to have the name 'CFS' changed to something

far more serious sounding and more appropriate. But the problem is that it

only appears that way if you don't have all, or indeed ANY, of the facts. When

you finally do, you quickly become aware of what a sham the idea of renaming

'CFS' really is and how it will make things so much WORSE for all the

different patient groups involved.

 

Please read this information on the US so-called 'Fair Name' campaign

carefully, and help spread the word. This proposed 'CFS' to 'ME/CFS' name

change is

just another time-wasting diversion that these vested interest groups are

hoping we will fall for, nothing more (as most of you here will already be

aware of).

 

This paper is available in a full-length version and a condensed version.

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

(http://www.ahummingbirdsguide.com/problemswithnamechange.htm) and

_http://www.ahummingbirdsguide.com/problemswithnamechangec.htm_

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

 

The full-length version also includes many truly excellent quotes from many

other M.E. advocates and experts on this topic.

 

Please repost and link to this paper as much as possible! This information

desperately needs to get out there, and not just to the usual groups, but to

all those out there who are actually supporting this terrible campaign. If you

would like to add this paper in full to your site or your homepage, please

do. Please do everything you can to link to or repost this paper where it

might do some good.

 

This really is life or death for so many poeple (as Sophia Mirza's tragic

case illustrated only too clearly unfortunately).

 

 

-----

 

New recommended websites

 

Some of these websites are new and some are not so new, but all have

something worthwhile to offer

 

1. The Sophia Mirza Archive, compiled by her mother, Criona Wilson.

 

Criona Wilson writes: 'Today, 9 am, sees the launch of a website I have

created in memory of my beautiful daughter who died of Myalgic

Encephalomyelitis.I have tried, without success, to gain justice from the GMC

and Social

Services over the dreadful treatment my daughter received, but to no avail. I

have

written to two Attorney Generals, numerous MPs and solicitors - again with no

result. It seems that ordinary people like me and my daughter can be treated

in the most appalling way and no-one is accountable.

 

I have therefore decided to publish all letters and communications

appertaining to my daughter's ordeal at the hands of the authorities, in an

effort to

ensure that this should never happen again to someone suffering from ME. I

hope that the doctors and social workers involved in my daughter's care

will now reflect on what they did and learn from their mistakes and

intransigence. I hope that other professionals will also learn lessons from

what I have

published and that no other person with ME will be treated so callously.'

 

_http://www.sophiaandme.org.uk_ (http://www.sophiaandme.org.uk)

 

 

[i'm sure I speak for many, many M.E. sufferers and advocates when I applaud

Criona's guts and determination and unwillingness to simply accept such an

appalling and tragic travesty of justice. We're supporting you all the way

Criona.]

 

 

2. Website for Mike Dessin: Severe ME sufferer

 

If you can, please help support the care of Mike Dessin who has very severe

ME and whose family can no longer afford basic care for him. Mike's father

says' I AM STARTING A FUND TO HELP KEEP HIM ALIVE. PLEASE HELP!'

 

_http://www.michaeldessinhelp.com/_ (http://www.michaeldessinhelp.com/)

 

 

3. The NICE Guidelines Blog: In search of medical honesty.

 

This site was created by an Australian GP with Myalgic Encephalomyelitis

(who goes by the name of 'Dr Speedy'), who says: " The Nice Guidelines are

biased publications based on the GOBSART (Good Old Boys Sitting Around a Table)

approach. This Blog however is not only evidence based but also uses

critical reading to judge papers and articles. I also use common sense and

listen to

others. And finally I read both psychiatric and medical evidence and

opinions from around the world to come to a conclusion. I'm not sponsored by

anybody

or paid by whatever company as seems to be the norm with many psycho people

who publish the same article almost on a weekly base. "

 

_http://niceguidelines.blogspot.com/_ (http://niceguidelines.blogspot.com/)

 

 

4. Greg and Linda Crowhurt's 'ME Training Co' website.

 

Highly recommended is their stunningly brilliant (aside from the use of the

term 'ME/CFS') recent article 'ME Awareness: Check out the facts' in which

they say:

 

You simply cannot sit safely on the fence believing that you are being

reasonable. There is no balance to be struck between psycho-corporatism and a

true

biomedical approach. People are dying right now from this illness.

 

The greatest threat right now comes not just from the psycho-corporate

lobby; they are so easily exposed. It comes from the moderates, the

lukewarmers,

the compromisers right at the centre; who cannot see the damage they are doing

by negotiating the truth away. Because the psycho/corporate lobby's truth is

a relative one (to a political agenda), it can be infinitely flexible, so

the goal posts can be constantly moved about by the corporate-psychiatric lobby

and the real truth perverted, especially by the brilliant infiltration of

patient movements.'

 

_http://www.metrainingco.org.uk_ (http://www.metrainingco.org.uk)

 

 

[This really is one of the best M.E. activism articles there is and I can't

recommend it highly enough. Thank you Crowhurst's! We need many more like

you!]

 

 

You can also get links to these excellent sites and others, at:

_http://www.ahummingbirdsguide.com/onlineresourcessites.htm_

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

 

------

 

That's it for this month!

 

All the best, as always, in your ongoing battle with M.E. or your loved

one's battle with M.E., until next month,

 

Jodi Bassett

--

A Hummingbirds Guide to Myalgic Encephalomyelitis:

_www.ahummingbirdsguide.com_ (http://www.ahummingbirdsguide.com)

 

" All that is essential for the triumph of evil is that good men do nothing "

Edmund Burke

--

 

-----------

 

A HUMMINGBIRDS GUIDE E-NEWSLETTER NOTES:

 

 

2. If you'd like to change the email address your newsletter is sent to,

just e-mail me your new details and quote the same number given above.

 

3. Permission is given for you to forward this e-mail provided it is

unedited. If you do so however, can you please make sure to delete my e-mail

address

from the top of the e-mail so I don't end up added to spam lists. Thank you.

 

4. If you have received this newsletter as a forwarded e-mail and would now

like to to the newsletter yourself, see:

_www.ahummingbirdsguide.com/websiteenewsletter.htm_

(http://www.ahummingbirdsguide.com/websiteenewsletter.htm) for details.

 

5. To read past newsletters/site updates see the 'What's New' section on the

website at: _http://www.ahummingbirdsguide.com/whatsnew.htm_

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

 

This email was cleaned by emailStripper, available for free from

_http://www.papercut.biz/emailStripper.htm_

(http://www.papercut.biz/emailStripper.htm)