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  1. Binkie4

    Why I want to lie down in public - BBC

    Was there 2 years ago but didn't have the energy to get off the cruise ship and actually look at it properly. The guide book lying on the bed had to suffice.
  2. Binkie4

    Tai Chi Equals or Betters Aerobic Exercise in Fibromyalgia

    I did a tai chi course weekly for about 9 years before I had ME. I really loved it. We followed a Master Lam's form and learned a miniform, short form and then the movements of the first 3 parts of a long form. During the summer we practiced in Richmond Park amongst the trees. Each class...
  3. Binkie4

    Tai Chi Equals or Betters Aerobic Exercise in Fibromyalgia

    Answer to your first question- yes. Definitely. EDIT: based on 10 years of weekly tai chi classes. Stopped about 2 years into ME. Unable to continue.
  4. Binkie4

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    Great expression " the discussion is part of the journey". I thought that is what this forum is about. Thanks @duncan .
  5. Binkie4

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    @Trish "It does seem a pity that people are rehashing old worries which have beeneffectively shown to be incorrect" (Apologies for not being in yellow) Please do you have a link?
  6. Binkie4

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    @B_V Please don't shoot the messenger. I'm only reminding you of what is out there. I am not writing about 1986 but 2015. "Negative crowd?"( BV) I am alone in bringing this to your notice as a response to the question you posed.
  7. Binkie4

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    @B_V I am not suggesting that someone who felt strongly enough to criticise the study online would then express an interest in volunteering, then decide not to participate. I do believe that someone who expressed an interest might then investigate further and perhaps not like what they see...
  8. Binkie4

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    @B_V Firstly, Thanks again for the detail you have produced re this study, tests etc. It gives more understanding of how this type of research is conducted, what tests are needed etc and the global nature of the whole process. In 1986, I had a spinal tap about 4 months into the viral infection...
  9. Binkie4

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    @B_V Thank you for posting the list of the scientists who are involved. I seem to remember some controversy relating to Dr Walitt's view of ME as a non biological illness. He is listed as lead clinical investigator. A quick look at ME pedia refers to a fairly recent article, 2015, with Dr...
  10. Binkie4

    Low oxygen SPO2 anyone?

    Has your O2 level changed upwards? I have bought another sats meter; now have 3. Two are in line, the other reads high so I will junk it. My reading is around 92, which is what the hospital told me when I was admitted for a day a few weeks ago. Saw my GP this week and he prescribed an inhaler...
  11. Binkie4

    Action for ME has joined S4ME

    Yes. You are right. But surely there has to be a point where science editors realise that they are just peddling old news. There must, mustn't there? It's like the flat earth society retaining its hold. Do we know any more about SMC being asked to leave CMRC? @Jonathan Edwards
  12. Binkie4

    Action for ME has joined S4ME

    Is anymore known about this? Also science editors whose information source was the SMC may be short of a contact. Do we know anyone reputable who could fill the gap? Chris Ponting?
  13. Binkie4

    PIP Tribunal

    So sorry @Wonko. I'm sorry for the decision that was made and for the effects on you of having to go through that horrible process.
  14. Binkie4

    Royds Withy King - The PACE trial – “one of the biggest medical scandals of the 21st century”

    Also member of MEAssociation. Bottom of page . Thanks @NelliePledge
  15. Binkie4

    Royds Withy King - The PACE trial – “one of the biggest medical scandals of the 21st century”

    @Andy If you are contacting this law firm. Could you advise them that there is an error of fact in their statement. Nice has not yet removed GET from the guidelines. Too crashed to send the sentence. EDIT: under heading " what does this mean for the future?"
  16. Binkie4

    (Stanford, California, USA) Recruiting: Brain MRI and Immune Profiling CFS

    I applied to the biobank but was too old. I wonder why they exclude "us ancients". I suppose it eliminates another variable. Dementia will be more frequent on the brain scans. We might be useful as a comparison group at some point but obviously not yet. Odd that you only have to " suspect"...
  17. Binkie4

    (Stanford, California, USA) Recruiting: Brain MRI and Immune Profiling CFS

    What about if you are over 60? The biobank has an upper age limit too; can't remember if it's 60 or 65.
  18. Binkie4

    David Tuller - Trial By Error: News About My Plans

    Very glad you will be staying around @dave30th. October 2015 was the beginning of my real education about the politics around ME. And still it continues.......
  19. Binkie4

    Petition: Remove CBT/GET from NICE guidelines NOW (ALL COUNTRIES can sign)

    Just checked AfME fb page and post I placed on Sat with link to vote is prominently displayed........ Would be great if it had some likes. Currently none.
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