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  1. LightHurtsME
    Post

    The Norwegian ME Association publishes survey on rehabilitation services - 2 300 respondents

    This is what I never understand from these kinds of surveys: how can more than a half be "satisfied" with the clinic/programme if three quarters...
    Post by: LightHurtsME, Aug 9, 2018 in forum: General ME/CFS news
  2. LightHurtsME
    Post

    Ron Davis's trypanosome 'signature' finding (IIMER conference 2018)

    According to some sources, this was later believed to be chronic brucellosis.
    Post by: LightHurtsME, Aug 6, 2018 in forum: ME/CFS research news
  3. LightHurtsME
    Post

    Ron Davis's trypanosome 'signature' finding (IIMER conference 2018)

    Cecile Jadin, based in South Africa, wrote a book on the subject of rickettsias and ME-like illnesses: [MEDIA] Anecdotally, grown up in Europe...
    Post by: LightHurtsME, Aug 6, 2018 in forum: ME/CFS research news
  4. LightHurtsME
    Post

    Petition to ask government agencies adopt ICC

    Can you please let me know how you know this? e.g. a link to where this appears. (thank you)
    Post by: LightHurtsME, Aug 6, 2018 in forum: Petitions
  5. LightHurtsME
    Post

    Silence challenge for severe ME

    Here is an article in the Scottish Sun about Amanda. It has many heartbreaking details about her. ETA: the article is from August 2017...
    Post by: LightHurtsME, Aug 4, 2018 in forum: Fundraising
  6. LightHurtsME
    Post

    Coping with hot weather

    As I am now completely bedbound (can't turn on the side, for example), I suffer greatly in the heat and while my partner is away, I have all the...
    Post by: LightHurtsME, Aug 4, 2018 in forum: Home adaptations, mobility and personal care
  7. LightHurtsME
    Post

    ME leads to home repossession

    Also, the mortgage interest benefit was only on a loan up to £125k (if I remember correctly, and this was lowered later) and not the actual...
    Post by: LightHurtsME, Jul 22, 2018 in forum: General ME/CFS news
  8. LightHurtsME
    Post

    'Shaking and trembling with ME/CFS' - Chronically Hopeful

    Just to add an anecdote to this. I sometimes manage to travel but my strict length I manage is 1.5 hours in a plane - during my really good...
    Post by: LightHurtsME, Jul 8, 2018 in forum: General and other signs and symptoms
  9. LightHurtsME
    Post

    'Shaking and trembling with ME/CFS' - Chronically Hopeful

    Have you had this checked thoroughly? I understand this could be a sign of a recognised neurological disease (more than one, I think), not...
    Post by: LightHurtsME, Jul 8, 2018 in forum: General and other signs and symptoms
  10. LightHurtsME
    Post

    What research do you want to see?

    I would like to find out why rituximab works for some people (it seems to work well for a small group) so that those it is likely to work for can...
    Post by: LightHurtsME, Jul 8, 2018 in forum: General Advocacy Discussions
  11. LightHurtsME
    Post

    Stamina levels before ME/CFS?

    I was working full time with frequent overtime, walked everywhere (e.g. 1 hour to work each way - people thought I was mad), went swimming every...
    Post by: LightHurtsME, Jul 8, 2018 in forum: General and other signs and symptoms
  12. LightHurtsME
    Post

    Reports from participants in GET and CBT trials

    I understand this is a personal testimony - but I don't understand how a therapist can be "fantastic" and "caring" when they didn't help and...
    Post by: LightHurtsME, Jul 4, 2018 in forum: Psychosomatic theories and treatments discussions
  13. LightHurtsME
    Post

    David Tuller: Trial By Error: Professor Sharpe’s Pre-Hearing Briefing for Monaghan

    How about "If I had done my homework, I would have passed the test."
    Post by: LightHurtsME, Jul 4, 2018 in forum: General ME/CFS news
  14. LightHurtsME
    Post

    Plans to ban 'gay conversion therapy' - UK

    Here is an article from 2010 by a journalist who went undercover to investigate conversion therapy:...
    Post by: LightHurtsME, Jul 4, 2018 in forum: Other health news and research
  15. LightHurtsME
    Post

    David Tuller: Trial By Error: Professor Sharpe’s Pre-Hearing Briefing for Monaghan

    No, you are not - I find that implies lack of attention to detail and disrespect in communication towards the audience - as if not bothering to...
    Post by: LightHurtsME, Jul 3, 2018 in forum: General ME/CFS news
  16. LightHurtsME
    Post

    "The three myths of the NHS"

    And how much time they get for this $40? (putting aside the possibility that they may things wrong again and again and how that adds up - in...
    Post by: LightHurtsME, Jul 1, 2018 in forum: Other health news and research
  17. LightHurtsME
    Post

    (Not a recommendation) (UK) "Chronic Fatigue Syndrome Conference: Costs, challenges and practice"

    A make-up salesperson 'educating' the medical community. About what, I wonder? How to apply eye shadow so that it looks good under the harsh...
    Post by: LightHurtsME, Jun 28, 2018 in forum: General ME/CFS news
  18. LightHurtsME
    Post

    Video: The PACE trial: a short explanation, Graham McPhee

    I see it now, figure 2, on the blue line, what looks like one participant aged 75-84 years. ETA: actually, it is a percentage of participants...
    Post by: LightHurtsME, Jun 26, 2018 in forum: ME/CFS research news
  19. LightHurtsME
    Post

    Video: The PACE trial: a short explanation, Graham McPhee

    Hi Esther, I looked at the link but can't find what you mean - can you please let me know what/where it says how old this participant was?
    Post by: LightHurtsME, Jun 26, 2018 in forum: ME/CFS research news
  20. LightHurtsME
    Post

    PACE trial data

    Just catching up on this thread. Absurd. As if anyone would believe that an organisation the size of QMUL doesn't employ Access database...
    Post by: LightHurtsME, Jun 25, 2018 in forum: Psychosomatic research - ME/CFS and Long Covid
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