• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. harveythecat

    S. Wessely - Death threats, abuse, smear campaigns - Standing up for Science: 29 March

    not yet - we're both q busy right now but am sure can get it up soon
  2. harveythecat

    I want to be tested for lyme (UK)

    Hello, I had a small itch on the back of my hand today and it reminded me that not long (though I'm not sure how long, maybe a few weeks?) after I first got ill, with ME , I had a round rash on the back of my right hand for a while ( I can't remember how long.) When I look at lyme rashes...
  3. harveythecat

    what is causing adverse reactions to SSRI class of drugs?

    I've just taken my first SSRI pill ever today - my doc said it was a low dose. At first I felt really sick for a short while and now I feel weirdly high. After reading this thread I'm worried about continuing
  4. harveythecat

    Graun - "My final year at Oxford, when I felt punished for having ME"

    @TiredSam thanks v much!!!
  5. harveythecat

    Graun - "My final year at Oxford, when I felt punished for having ME"

    @Aurator spot on. Oxford refuses to accommodate for those with disabilities. It is extremely rare to, for example, be able to spread out final exams over two years and there are no options to do courses part time. It's completely rigid. If you are unable to physically keep up with an often...
  6. harveythecat

    Graun - "My final year at Oxford, when I felt punished for having ME"

    Ah yes is me :)
  7. harveythecat

    Guardian article: ME affects four times as many women as men. Is that why we’re still disbelieved?

    Trust me - we're on the same side. Like I say, am trying to get a longer article out there. I'm v tired after the protest today so don't really want to be defending myself online after working so hard to be honest!
  8. harveythecat

    Guardian article: ME affects four times as many women as men. Is that why we’re still disbelieved?

    Hi - the journalist here! Nice to meet you. Of course I'm aware of all of those things and want the public to be aware of them as much as possible. I think stating in a national paper, with links, that the PACE trial did not lead to recovery in the way scientists said it did, is quite a big...
  9. harveythecat

    Article about ME/PACE for British newspaper - what do you want included?

    okay - just to let you all know, this is still going to be published - but not til 26/27 of september (so will conincide with millions missing.) it's not as long as i would like but still happy with it! thanks again for your help.
  10. harveythecat

    Article about ME/PACE for British newspaper - what do you want included?

    I'm looking into how many pwme are able to get benefits in the UK. I've found some FOI requests but the DWP will not break down statistics by specific illnesses, so I can't find an exact figure. I found this on the ME Association's site...
  11. harveythecat

    Article about ME/PACE for British newspaper - what do you want included?

    also - this forum is amazing and everyone is so knowledgeable!
  12. harveythecat

    Article about ME/PACE for British newspaper - what do you want included?

    Right I see - thanks for that! not too surprised that there is variability tbh. I've been told on Twitter that the 75-85% comes from a new study by Lenny Jason, but not got a citation for it yet... I think CDC says 75%
  13. harveythecat

    Article about ME/PACE for British newspaper - what do you want included?

    Hi everyone. Please could you help me with a few things? I'm trying to find a source for some of the facts provided by ME Action/ Millions Missing. Specifically that 75-85% of pwme can't work and only 5% recover. Does anyone know where these figures come from? Also: . What is the best source...
  14. harveythecat

    Article about ME/PACE for British newspaper - what do you want included?

    I know that's what is being asked by Millions Missing etc. - have they officially agreed to it?
  15. harveythecat

    Article about ME/PACE for British newspaper - what do you want included?

    Hi - please can you tell me where the 250 million dollar figure comes from? many thanks
  16. harveythecat

    Article about ME/PACE for British newspaper - what do you want included?

    Okay - thanks everyone. I've already written two personal articles. This article (IF it is published and IF i can include all the stuff I want) will be a blend of 1 and 2.
  17. harveythecat

    Article about ME/PACE for British newspaper - what do you want included?

    Hi @Stewart thanks so much for that. Do you happen to have a link for a good source that shows that the 2 and a half year follow up showed v poor results?
  18. harveythecat

    Article about ME/PACE for British newspaper - what do you want included?

    Great - how would you like to be described? 'Emeritus Professor of Connective Tissue Medicine at University College London (UCL)' ?
  19. harveythecat

    Article about ME/PACE for British newspaper - what do you want included?

    Hi @Jonathan Edwards can I quote you on the following: 'Psychiatrists have claimed they have a theory that it is supported by effective treatment, but it has become clear that there is no coherent theory and the evidence on treatment is poor.' ?
  20. harveythecat

    Article about ME/PACE for British newspaper - what do you want included?

    Sorry what do you mean good stuff from the UK?
  21. harveythecat

    Article about ME/PACE for British newspaper - what do you want included?

    Thanks so much for your input everyone, it's so helpful and I'll deffo take these ideas into account. One possible line of thought (not necessarily the whole article) is linking the PACE trial with the DWP, and the (scientifically flawed) biopsychosocial benefits system in the UK, ties to...
  22. harveythecat

    Article about ME/PACE for British newspaper - what do you want included?

    yes @Esther12 - that's exactly it - hard to write something concise and easily understandable to public! I would like to use the fight for data release as a hook.
  23. harveythecat

    Article about ME/PACE for British newspaper - what do you want included?

    Hello, I've got an opportunity to write an article for a big British paper about whatever I want basically, to do with ME etc. There's no guarantee at this stage that they'll publish it and it'll probably be limited to 700 words. What one thing/statistic/fact/story etc. would you want included...
  24. harveythecat

    Guardian article - Why not date someone with ME? We’re tough survivors

    http://www.theguardian.com/commentisfree/2016/may/12/date-me-chronic-fatigue-syndrome-illness?CMP=fb_cif
  25. harveythecat

    Huffington Post article 'The Misleading Research at the Heart of Disability Cuts'

    Hi, I can't seem to see this anywhere else but apologies if this is a repeat post. Great article in the Huff Post (UK), following on from the longer report by the Centre of Welfare Reform. Discusses Pace and how it links to wider issues of disability cuts...
  26. harveythecat

    Queen Mary Student Union - The Print

    i know at oxford the term doesn't finish until mid june and not everyone has exams every year.
  27. harveythecat

    Queen Mary Student Union - The Print

    Also - it doesn't just have to be students/ex students. anyone could email in to student newspapers with a story - the student reporters would probably find it really exciting.
  28. harveythecat

    Queen Mary Student Union - The Print

    Hi - yes we did indeed. Me and a current student, also with ME, were going to write something, then we both were too ill to do it on top of other things. I still think galvanising students at these unis and getting stuff written in the student press is a good idea. It's something I might be able...
  29. harveythecat

    Forgotten Plague: UK screening + Presentation on mitochondrial function research in ME/CFS

    might try and go. would relish attending this in the same hospital that treated me so poorly re. my ME/CFS. *edit: maybe 'relish' is not the right word thinking about it.
  30. harveythecat

    24 ambulatory ECG

    Thanks Ryan, shall do!