A Hummingbirds' Guide to M.E. newsletter

Discussion in 'Fibromyalgia Main Forum' started by mezombie, Jun 13, 2009.

  1. mezombie

    mezombie Member

    Please check out the following newsletter.

    It's worth scrolling down to the end of this as there's a lot of valuable information in here.



    Hello and welcome to the 'A Hummingbirds Guide to Myalgic Encephalomyelitis'
    e-newsletter for May/June 2009

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

    I have a few new things to tell you about this month.


    Support fund for Kay Gilderdale set up by the 25% M.E. Group

    The 25% Group/Simon Lawrence writes:

    "I have posted below details of a proposal to start a support fund to help
    cover expenses which are likely to be incurred by Kay Gilderdale during her
    forthcoming hearings in connection with the charge against her. This follows
    numerous emails, letters and calls from well-wishers who wished to show
    their support for Kay and who have directly asked us to set up such a fund."

    "Many people were saddened to learn of the death of Lynn Gilderdale, in
    December 2008. Her mother, Kay, has been accused of the attempted murder of
    her daughter, and has a Plea and Case Management Hearing on July 3rd 2009.

    Following recent and numerous requests from supporters and well-wishers, the
    25% ME Group has decided to set up a support fund to assist Kay: this is
    specifically to help with expenses incurred as a direct result of her court
    case, including such personal items as hospitality, travelling costs,
    stationery, all other sundry expenses and any associated legal costs
    incurred during the judicial process which are not covered by the Legal Aid
    Board- but not to directly fund her legal fees which are being met by the
    Legal Aid Board.

    Lynn was very severely ill for 17 years, and Kay was her devoted mother and
    carer throughout her whole illness. They both contributed much to raising
    awareness of severe ME, and the picture on the home page of the 25% ME Group
    website is of Lynn.

    Your support is greatly appreciated by Lynn's family. We have also included
    a message of thanks from Kay herself as follows :

    I am so very grateful for the extremely kind suggestion, from the ME
    community, that a fund be set-up to help with my expenses in connection with
    my court case.

    I have already been helped so much by the messages of support and wish to
    thank you for the strength you have given me. I hope to reply individually
    to each one, but for now, as letters continue to be added to the hundreds I
    have already received, all I can do is send a heartfelt thanks to you all.

    The proposed idea of a support fund is absolutely wonderful. I totally
    reject the charge given and intend to challenge it, not only for myself, but
    for the truth that M.E. is not just tiredness, poor memory and achy muscles,
    but bad enough to cause death, whatever form that death may be. So, I accept
    and welcome your generous offer of help.

    It may turn out that some or all of the money is not needed for my defence
    purposes. If that is the case, I suggest that it would be used instead, by
    the 25% Group, in whichever way they consider most appropriate. Thank you.

    Kay Gilderdale"

    Donations can be made via cheque, or online, please contact the 25% Group
    for details. (The 25% Group add: Please signify that this donation is for
    the Kay Gilderdale fund. Also, if you require a receipt, please enclose an
    SAE. Thanks.

    See: www.25megroup.org


    Send a message of support to Kay Gilderdale

    Lesley Ben has offered to pass on any messages of support to Kay Gilderdale.
    (If you can't afford to send money, you can still offer your support - and
    this is also valuable.)

    Each message will identified by your first name, or if you'd rather be known
    by another name, or be anonymous, please let Lesley know.

    Email your message to lesley.ben99@yahoo.com and it will be passed on to


    Financial support for the 25% M.E. Group

    The 25% M.E. Group - one of very, very few genuine M.E. charities we have
    worldwide - is in need of your financial support. If you are in a position
    to be able to make a donation, large or small, please do so.

    See the website for details:



    New relevant/recommended articles:

    1. (Sue Waddle explains that:) Criona Wilson (mother of Sophia Mirza) has
    added a new section to her website which includes facts about the WHO and
    ME, asks some searching questions, and includes a letter which can be
    downloaded to send to MPs.

    She says: "By doing something positive, we can all help to change the lives
    of seriously ill people for the better; conversely, by doing nothing *we are
    allowing* such cold-blooded criminal cruelty to continue."

    See: www.sophiaandme.org.uk

    2. Comment - New Journal called FATIGUE, a critique by Stephen Ralph


    3. Hillary Johnson writes: 'I addressed the IiME intl. conference in London
    on May 28th, and have posted the text of my speech to my website blog at

    The title of the speech is "The Why," and it's a history of the CDC's
    influence on the pandemic disease M.E., with a few potential "game changing"
    suggestions for patient advocates in my summary. The content of this speech
    seems particularly apt now."

    4. ME v CFS: WHAT IS THE CDC DOING ABOUT ME? by the ME/CFS Legal Resource
    Administrator (Australia)


    (Note that the HGME site does not in any way support the use of the harmful
    and misleading term/concept of 'ME/CFS' - although it does strongly support
    the content of this article, and applauds the authors for writing it.)

    5. Testing Prof. Kenny de Meirleir's test, a critique by Ciaran Farrell


    (Note that the HGME site does not support in any way unscientific and
    unhelpful terms and concepts such as "ME/CFS/CFIDS" (etc.) that are used in
    this article. The general content of this article is strongly supported,

    6. CFS Patient Groups Cowed By The CDC? a critque by John Anderson


    See also: 'Epidemic Myalgic Encephalomyelitis: A Demand for Urgent Action
    and Accountability' by John Andersonhttp://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0905d&L=co-cure&T=0&F=&S=&P=57


    The Nightingale Definition of M.E. by Dr Hyde is now available in book form

    The book includes the paper 'The Completities of Diagnosis.'


    The foreward is by Professor Hooper. The book was produced in co-operation
    with Simon Overton and is very reasonably priced. The book will also be
    available via Amazon in the near future.


    That's it for this month.

    As you can see, little new has been added to the HGME website this month. I
    do hope to be able to announce a big new M.E. project over the next few
    months however. Perhaps even next 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:

    The invention of Chronic Fatigue Syndrome has to be one of the most curious
    cases of inventive American scientific imperialism that one could imagine.
    Dr Byron Hyde 2006

    "M.E. illness in adults is associated with measurable changes in the CNS and
    autonomic function and at times injury to the cardiovascular, endocrine, and
    other organs and systems." Dr Byron Hyde

    'Insanity: doing the same thing over and over again and expecting different
    results' Albert Einstein.



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    [This Message was Edited on 06/24/2009]
  2. 3gs

    3gs New Member

    Thank you for posting this. I have been following these cases on youtube and am appalled and heartbroken for these families and everyone suffering.

    I will do what I can.

  3. Khalyal

    Khalyal New Member

    Thank you for posting this. What a travesty.

  4. Sacajawea2

    Sacajawea2 Member

  5. Rafiki

    Rafiki New Member

    All of these stories seem to be flying under the radar of some on the board. Thanks for posting!

  6. Sacajawea2

    Sacajawea2 Member

  7. Sacajawea2

    Sacajawea2 Member

  8. Sacajawea2

    Sacajawea2 Member

  9. skeptik2

    skeptik2 Member

    doesn't even begin to describe the laxity of purpose of too many here.

    If one cannot educate oneself about their own illness, they cannot help themselves, much less others.

    Not too many know who Hyde is; they may like his quotes, but not understand his implications of a "inventive American scientific imperialism" at all, at all...

    I'm very discouraged right now. Maybe trying to learn how to work a PC finally has done me in. The "I'm thinking of getting a pup" post HERE on the ME/FM board, really enrages me.

  10. Rafiki

    Rafiki New Member

    I hear ya. (I did finally cave and post on "that" thread, though :eek:) We used to have a different notion of what belonged on the Chit Chat board, I think.

    I know that we both hear those (including us, really) who find the attempt to stay abreast of things difficult and, even, painful. I have seen how encouraging you have been as people struggle to get on board. You are doing all you can.

    I can see how having to adjust to a computer would push you over the edge, temporarily, but it should make everything so much easier once your are over the learning curve.

    Anger is exhausting, Skeptik, you can't afford it. I am a Buddhist and we have a very helpful way of understanding anger. Anger is like a hot coal the angry person holds, intending to throw it at the object of the anger. The one who really suffers is the person who is angry.

    It's so hard to deal with the frustration. I know you are frightened for your girl and don't want her to go through what many of us have. I suspect you are tired and you have every right to be.

    We all need to find enormous wells of patience in order to survive this. But, Skeptik, one of the reasons it feels so terribly frustrating now, I believe, is that we really are in the home stretch. We can't know how long this stretch is but, for the first time in a long while, we know things will change in fundamental ways and we know we can help that process along. We also know that not everyone gets that and that is very frustrating but people just don't know what they don't know.

    If I were you, I would turn my attention to my own peace of mind for just a little while so that I could be most effective and so that I could avoid giving any of my precious energy to anger or frustration. Difficult but totally possible if you give yourself what you probably need right now.

    Breathe... in... breathe... out... breathe... in... breathe... out

    That may look silly but I must do it, just like that, several times a day and I swear it really helps.

    Peace to you,

    [This Message was Edited on 06/24/2009]
  11. Sacajawea2

    Sacajawea2 Member

  12. hdparadis

    hdparadis New Member

    I'm sorry if some of the posts are angering you but some of us are unable to process all this information coming at us. I can only speak for myself but posts like the original one here are very hard for me to read and understand. I would love to be more proactive but after working all day my brain is fried. Have you ever thought of offering to help those of us who just cannot grasp these long and technical posts instead of getting upset with us? I for one would be very grateful for help understanding what I am reading. Not trying to be difficult just a suggestion.