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Advocacy Advice Urgently Needed!!!

Discussion in 'Action Alerts and Advocacy' started by filfla4, Mar 1, 2011.

  1. filfla4

    filfla4 Senior Member

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    Hi, I'm based on the tiny island of Malta in the Med (yes...I know we've been in the news recently!)

    Anyway, we have an ME/CFS email support group and together with two other members I've been pretty active in getting stuff into the papers, etc., particularly all the xmrv research last summer.

    This weekend we managed to get a two-page article in a life-style magazine which is circulated with one of the main Sunday newspapers. It was just a general "Understanding ME" type of article informing the general public about the condition....this was written by one of their journalists who was exceedingly cooperative. The only glaring problem was in the final para she quoted an official from the Ministry of Health as saying that all ME patients are regularly treated by consultants at the local general hospital and the health service has no intentions of introducing any new services for this condition.

    We well know that the local medical profession are very poorly informed about ME. It goes unrecognised most of the time and patients go from specialist to specialist without getting any help at all. There are patients who are really suffering with no support at all.

    So, one of our members has written a letter to the editor disagreeing with this opinion and explaining the problems experienced by ME patients.

    I took it upon myself to write an email directly to this person that was quoted from the Ministry of Health. I wrote in my personal capacity and briefly explained my experience of the last 18 years. I also backed this up with the fact that I have recently started seeing KDM in Brussels, who has identified specific biomarkers which are not right in my tests. I explained that while some of the treatment I am receiving is experimental, there is a lot that can be done to help patients which is relatively cheap and easy to do, such as identifying allergies, diet, pacing, vitamin supplements (for methylation), and so on.

    Please understand that while I am lucky enough to be being treated in Brussels, there are many patients locally who do not have the resources to do this, do not read up much on the condition and who have been marginalised by the medical profession. They are seriously suffering.

    Anyway....I never expected a response and lo and behold I received the following within just a few hours:

    "Thank you for your e mail contents of which have been noted. I shall be bringing this to the attention of Consultants at Mater Dei Hospital. Presently there are no specific plans for development of special services for ME patients but we are always open to continue to develop our services based on the best international evidence and whilst I regret I will not be able to attend the International conference you indicated below, any material which you wish to send to us will be taken into consideration when developing plans for new services."

    The conference I recommended they send somebody to is the upcoming Invest in ME conference happening in London in May.

    So....do you have any advice as to how I can take this further? She circulated her response to me to no less than three other people also within the Ministry of Health. The key is "the best international evidence" as to how to help ME patients from a public health perspective. I need to get my hands on published scientific articles from reputable sources as to how to clinically help ME patients. I would not go down the xmrv road at this point, or gcmaf, or anything vaguely controversial like antiretrovirals. I'm just looking for stuff on the obvious: allergies, diet, vitamins, supplements, etc.

    CAN YOU HELP ME BRAINSTORM ON THIS?????
     
  2. cigana

    cigana Senior Member

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    Hi Filfla,

    Good news! The only thing I can think to say is that they should make sure there is no other reasons for the fatigue. According to rlc in his post (here http://forums.aboutmecfs.org/showth...-we-resolve-our-community-s-differences/page6), there are 297 illnesses providing a differential diagnosis, the list is here:

    http://en.diagnosispro.com/differen...ific-agent-chronic-fatigue/25271-154-170.html

    I really hope that someone more knowledgable replies here with some evidence for treatment options. You might also want to try finding out about Cheney and Myhill's treatment (although I know they are not published) and Rich Van K's methylation treatment (a trial attached). Also consider Maes work (attached).

    Magnesium is very important and safe and shown to work in a Lancet study (also attached).

    Anybody know of any trials showing the efficacy of B12 or treatment for POTS?

    Mark
     
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
  4. filfla4

    filfla4 Senior Member

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    Thanks both of you - very helpful!! Any other advice anyone???????
     
  5. eric_s

    eric_s Senior Member

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    I think the document Justin has posted is very good. I hope this is the full version, the same like the printed book.

    Maybe you also want to tell them about the Stanford CFS initiative (http://chronicfatigue.stanford.edu/), Stanford is quite a name and it might impress them.
     
  6. filfla4

    filfla4 Senior Member

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    Thank you all of you for your posts and thank you to those of you that have sent me messages. I appreciate your input. I'm going to have to think long and hard about this one and also confer with my support group locally. Thanks!!
     
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Filfla,

    Great going! This is a wonderful opportunity. Have you thought of including the documented immune dysfunction as found by Docs like Nancy Klimas?

    For the human angle, there was a great interview with Laura Hillenbrand published in the New York Times yesterday. She describes, as only a good writer can, what daily life is like. http://well.blogs.nytimes.com/2011/02/04/an-author-escapes-from-chronic-fatigue-syndrome/

    Keep us posted!

    Sushi
     

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