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  1. Jan

    Science for ME PACE Briefing document

    Or always appears to be too busy :(
  2. Jan

    Pediatric chronic fatigue syndrome: current perspectives (Crawley)

    I'm not necessarily talking about this study, I really can't bring myself to read it and I've nothing to hand to use as a sick bowl.
  3. Jan

    Pediatric chronic fatigue syndrome: current perspectives (Crawley)

    I don't understand the whole research world, so could someone who knows more than me tell me how they justify doing virtually the same study over and over (and over) again? How do they justify the research funds, how do they get given the funding? There must be literally 100's or thousands of...
  4. Jan

    PACE trial TSC and TMG minutes released

    Can you imagine any other scientific study including patients with a different disease? Study MS and throw in some RA patients, study cancer and throw in some with dibetes to make the numbers up? This is horrifying and was not even declared. It really shows the utter contempt with which they...
  5. Jan

    Dr Myhill’s complaint to GMC about PACE authors.

    :cry::cry: Yes, it really is criminal and shows how dangerous medic's misconception of ME can be. :mad:
  6. Jan

    Action for ME has joined S4ME

    A very nice comparison between Hilter and BPS school, couldn't have put it better myself! :laugh: Yes, I know you didn't mean it like that, just let me have my bit of fun ;)
  7. Jan

    CBT- Jen Brea Twitter

    How will we ever get studies to test these drugs when nobody wants to fund them? I get a bit sick of that line 'there's no clinical evidence' of course there isn't, research studies cost a lot of money and nobody cares enough about ME to do them! The research that does take place seems to only...
  8. Jan

    CBT- Jen Brea Twitter

  9. Jan

    CBT- Jen Brea Twitter

  10. Jan

    CBT- Jen Brea Twitter

  11. Jan

    CBT- Jen Brea Twitter

  12. Jan

    does anyone get these symptoms? (mainly skin-based!)

    I share many of your symptoms @Nathalie Wright the muscle twitching began early into the illness and now often occurs during PEM. I have skin rashes for no particular reason and also sensitivity to things like biological washing powder, in fact a great deal of washing powders and fabric...
  13. Jan

    United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

    I'm another one who doesn't expect to be still alive by the time any treatments are discovered. It has been soul destroying waiting for decade after decade as any progress made by researchers back in the 80's regressed into 100's of psych studies. Is there any chance Holgate may step down...
  14. Jan

    United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

    FUCK! That's all I want to say.
  15. Jan

    United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

    Will this mean Fester Crawley stops doing research?
  16. Jan

    Dr. Bateman's Summary of Clinicians' Summit March 2-3, 2018

    I wish she'd come to the UK and do the same.
  17. Jan

    Daily Mirror: "Heartbroken mum suffering a 'living death' that means she can only see her son a few minutes a day"

    I've always thought this, ME awareness days should not just be all fluffy and solely for fund-raising. The most powerful thing I've seen is the names and details of the dead on placards at Millions Missing demos. The public needs to see this, though it is obviously very distressing for the...
  18. Jan

    Daily Mirror: "Heartbroken mum suffering a 'living death' that means she can only see her son a few minutes a day"

    Totally agree, the stories need to be much more hard hitting like this, including the reality of severe ME, the deaths and the numbers of suicides due to the immense suffering and lack of medical care and hope for the future. Their stories must be told, we owe it to them.
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