European ME/CFS think tank formed

Discussion in 'Fibromyalgia Main Forum' started by outofstep, Jun 6, 2009.

  1. outofstep

    outofstep Member

    Last edited: Feb 17, 2014
  2. skeptik2

    skeptik2 Member

    This is wonderful news!

    I think the CDC is in real trouble now!

    I also think the scientists and researchers are coming out of the woodwork because a few are soooo close to getting answers and no one wants to be "left out" of the future accolades.

    It's about darn time, don't ya think?

    All this pressure is helping, so keep up the pressure.

    Did you all see the POLL sent out thru Co-Cure re: the cdc's 5 yr plan? 94% voted Reeves OUT!

    You all helped make both the Think Tank and the firing of Reeves (SOON) possible, with your activism and responsiveness to the alerts we have all been getting.

    Why hasn't ProHealth taken a stance on this topic?
    I'm very surprised.

  3. AuntTammie

    AuntTammie New Member

    good news! yay - I really needed some tonight
  4. chrissy12

    chrissy12 New Member

    Thanks for sharing this news with us.. It is wonderful that there is progress being made, slowly, but surely.
  5. jasminetee

    jasminetee Member

    Thanks so much for posting this outofstep. You're doing a great job keeping us all informed. I really appreciate it. :)

    I had to read this a few times: "Several treatable clinical entities have been discovered." What?? What are they talking about?

    I'm very interested in what they have to say. I noticed Kenny DeMeirleir is on the panel as well as some virologists, internists, a neurologist, an oncologist, and a pediatrician.ETA: And not one shrink yeah!

    Pinch me. I must be dreaming. :)

    [This Message was Edited on 06/08/2009]
  6. Rafiki

    Rafiki New Member

    There was also some kind of announcement out of Norway in the last few days stating that, Officially, ME would be seen as the serious illness it is, that GET and CBT would no longer be the treatments of choice, that people would bet benefits...

    People on other boards have been emailed re this from Norway and Norwegians have translated official statements but I can't find anything online.

    Big things happening in Norway! Any Norwegians on the board?!?!

    Peace out,
  7. Forebearance

    Forebearance Member

    Thank you so much for telling us about this, outofstep!

    I'm so glad!

  8. Catseye

    Catseye Member

    How ridiculous! They say they want to educate health care professionals on how to better manage this disease. Well, they already don't manage it so who are they kidding? This is just another "string along" by the medical profession. The protocols at tell you how to get over it. The medical profession can't use these methods because they only have drugs and surgery at their disposal - the same methods they use for crisis management, which they should adhere to exclusively. And you need to incorporate an individually tailored diet and supplement plan for each patient.

    And as for their continued research, they are only looking for patentable treatments, or drugs. This is just like the American Cancer Society and their "fake" search for a cure. Sure, they are looking for a patentable cure, but ONLY a patentable one. If somebody finds a natural one, you won't even hear about it. But they take public donations! The medical profession's take on chronic diseases is pretty slimy as far as I'm concerned. But the internet is changing all that, although it is as slow as molasses in winter time.
  9. znewby

    znewby Member

    God bless Norway!
  10. Spinetti

    Spinetti New Member

    The CFSKnowledgeCenter site also has some interesting comments added to Dan Moricoli's blog post on developments in Norway.

    Kaninkoker also added a video there of a March 12th interview with Annette Whittemore. It's titled "Real progress in ME/CFS research." I hadn't seen it before. It sounds very promising!
  11. jasminetee

    jasminetee Member

    This is exciting news. Thank you Norway!!!

  12. simpsons

    simpsons Member

    OK here we go,

    it made sky news and bbc news 24.

    Thanks for posting this is important

    i would also be very interested to hear prohealths response to this

    this is only today that this has happened so this is just a what has made it to you tube so far

    [This Message was Edited on 06/13/2009]
  13. Sacajawea2

    Sacajawea2 Member

  14. simpsons

    simpsons Member

  15. simpsons

    simpsons Member

  16. Spinetti

    Spinetti New Member

    There is an older interview with Dr. Shepherd from December 20, 2008 on YouTube at:

    The comments on the video, including some from Dr. Shepherd himself, give an idea of the controversy surrounding him.
  17. jasminetee

    jasminetee Member

    Spinetti, thanks for drawing our attention to the comments on Youtube.

    Dr. Shepherd writes:

    "Corrections to misleading and inaccurate information that has been posted about my personal and professional life:

    I was working as a hospital doctor (Resident Medical Officer) when I developed ME.

    My position as? Medical Adviser to the ME Association dates back 20 years - the appointment is made by trustees and is unpaid.

    I have never been employed by the BMA to speak on ME/CFS.

    Doctors can still practise medicine without joining the GP or specialist register.

    Dr Charles Shepherd"


    "Doctors and researchers often refuse to use the name ME because there is no firm pathological evidence of widespread inflammation involving both brain and spinal cord (= E/encephalomyelitis).

    I proposed the term encephalopathy because it describes the well recognised neurological symptoms and abnormalities in brain function that have been identified - it has therefore become acceptable to many doctors and the Dept of Health.

    But people are free? to choose whatever name they want." ~ Dr. Shepherd

    Dr. Shepherd has ME, I found that out by reading the comments. Basically he's arguing with one guy over whether he's trying to ignore the "fact" that "
    We just do not have the necessary evidence from autopsies to? say that people with ME have inflammation in both their brain and spinal cord."

    To me, Dr. Shepherd seems like he wants to find the answers to the ME enigma and whether or not he believes different theories regarding ME is irrelevant. I don't agree with the guy arguing with him that because he doesn't believe in the inflammation he's dooming ME to be seen as a psychological illness but I certainly understand the passionate anger that the arguer feels. It just seems to be a bit misplaced.

  18. simpsons

    simpsons Member

    charles has hotly debated and been publicly against the cbt get role and i agree with you that i don.t agree with ciaran i think that this is a great pr opportunity for people to post good links to strong research and build on this so that those who watch it can be educated.

    all this does is show the bad side of ME with everyone arguing publicly. what we need ot do is find a way forward instead of arguing. rather like naughty school children who have lost their way they need guiding in the right direction

    no one is perfect but i don.t see this guy raising money for charity for research and he shows no way forward. at least charles though not perfect is open and gets on the tv and publicly denounces with passion cbt and get. they do have links with me research uk and both fund projects and action them.

    if some clever people can post links to gene research etc to build on this positive pr opportunity then that would be great.

    some how we have to try to get everyone to work together and show a united front.

    arguing publicly does us no favors whatsoever and may damage our image that has been strengthened by this positive publicity.

    now back to the fact that we have a nobel peace prize winner on that european think tank formed shortly after the announcement of a cheap and easy to do home test kit to indicate ME. all this arguing has taken our eye off the ball. as john herd said on co cure we need to stop wasting energy on what we call it and get on with the job in hand.

    the cancer charities all banded together and together they are strong that what we need to do be strong together and find common ground that we all agree on. the gene research is strong by dr kerr and we have 5000 research papers and well said charles that this its all in your head is behind us now we have these 5000 research papers and gene research

    not happpy with charles in some ways but he is up there in the public eye so just try to lobby him and let my voice as a patient be heard he does listen sometimes as the speach he gave was just what i wrote to him to tell him to emphasize

    the me association though not perfect is way way better than action for me. whom i do have a real problem with

    don.t want to get into a hugh row over this but we do need to promote this with facts that are hard hitting and can be understood. people who are new to this illness need information not to be stressed out by bickering from personnel experience they are distraught enough having this dx as it is