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    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.

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  1. S

    David Tuller: My brief encounter with Prof Crawley

    aha don't always believe what Google says ;)
  2. S

    David Tuller: My brief encounter with Prof Crawley

    and what about the journalist that wanted stories on people harmed by GET. Even if she had to keep the people anonymous, an ongoing story might be really valuable.
  3. S

    David Tuller: My brief encounter with Prof Crawley

    they were my fave as well - i was at ucl too and lived just round the corner from them :)
  4. S

    David Tuller: My brief encounter with Prof Crawley

    I can probably send you some lists as I have been going through loads of sites and collecting info lately (might need to tidy it up!). What about contacting Margaret Williams as well - she has a huge array of letters she has sent to establishments and the papers she writes (and Malcolm Hooper)...
  5. S

    David Tuller: My brief encounter with Prof Crawley

    I would get her to record any phone calls she gets from them. Radio 4 would probably be interested after all they have done recently. Also quote BMJ latest report which says only use GET for mild cases and it isnt a cure etc. And quote the other latest statements from CDC etc. List them all...
  6. S

    David Tuller: My brief encounter with Prof Crawley

    If she did say this and there was no restraining order then that woul be a good libel for DT to follow up, and he could ask for a public apology
  7. S

    25 Oct E Crawley speaking at Better Science Better Data event......

    I did get most of it on my camera balanced in front of the laptop
  8. S

    25 Oct E Crawley speaking at Better Science Better Data event......

    there should be symmetrical scrutiny over conflicts of interest - said some people who oppose her do crowdfunding to support people who oppose her. Q- is there a role for data papers that describe data without giving access to datasets. A - interested in where they can combine data with other...
  9. S

    25 Oct E Crawley speaking at Better Science Better Data event......

    Should we release confidential data under FOI - her question is can data be truly anonymised. Using PACE trial as example (then talks about cake for a bit, and she can let you read the trial report over a cookie). Uses examples of Netflix and politics about how it doesn't work. In SMILE it's...
  10. S

    25 Oct E Crawley speaking at Better Science Better Data event......

    she is talking about the torrent of abuse she has received fake news and petitions against her research. Untrue that they increase exercise - they decrease it and people complain they are not exercising enough. Journalists have said they won't report on it She hates cyber stalking - and it's...
  11. S

    25 Oct E Crawley speaking at Better Science Better Data event......

    The livestream is working at the moment and the speaker before EC has just started their talk. I don't know how to record it (other than having a camera in front of the computer :))
  12. S

    25 Oct E Crawley speaking at Better Science Better Data event......

    If any of the other panel members have ever queried Crawley (and if anyone knows them) it would be worth seeing if they could be primed to ask some probing questions
  13. S

    The UK's brutal treatment of severely disabled: claimant found fit to work for 12 mins a day

    as there was the R4 programme talking about this last week you should send this to them as well. It is so ridiculous that I'd be surprised if it didnt interest them and it coukd lead to more talk on the radio. The press love stupidity on this scale!
  14. S

    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    To indicate the ludicrousness of the lightning process maybe we should suggest an enhanced version where we use coloured paper on the floor. I am sure colour therapy could influence the degree of results. I would name it the Rainbow Farce.
  15. S

    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    I sent a link to the programme to someone and just clicking on it again I still get the whole...
  16. S

    ME/CFS (CFS/ME!) on BBC "Today" Programme NOW - can anyone tune in

    I sent a link to the programme to someone and just clicking on it again I still get the whole programme - http://www.bbc.co.uk/programmes/b095ptl7 So if there is not a full recording and someone can do it then it looks like it's still available. If not I will ask techie partner if he can do it...
  17. S

    ALL Countries Please sign the MEA's new petition to NICE:do not classify ME as 'functional'

    They can't use one rule for one guideline and not for another
  18. S

    ALL Countries Please sign the MEA's new petition to NICE:do not classify ME as 'functional'

    From looking into this in relation to an insurance claim it seems to depend on the other word that gets attached to functional - nervous, neurological, somatic. If it is nervous then it relates to mental health, neurological is organic and somatic is emotional and is now being used instead of...
  19. S

    Phil Parker On Wikipedia trying top get SMILE added

    bubbles?
  20. S

    NICE GUIDELINE ON ME/CFS WILL BE UPDATED! (Sep 20th 2017)

    Where did 2020 come from? I don't recall seeing this in the NICE statements and can't find it on their site, but I have probably overlooked something so please let me know :)
  21. S

    "Unrest" updates

    I think it's worldwide - https://itunes.apple.com/gb/movie/unrest/id1265409535 can be pre-ordered now
  22. S

    New Times article on NICE (mostly good)

    You can apply to be on their Adoption and Impact Programme Reference Panels via the website and they have another section where they advertise vacancies on specific boards https://www.nice.org.uk/get-involved
  23. S

    ME/CFS (CFS/ME!) on BBC "Today" Programme NOW - can anyone tune in

    i agree, as a graduate of UCL which was just published as one of the top 20 universities in the world, I was horrified to see people from there quoting about this in a positive way. Could pass on to the provosts PR department saying it doesnt do much to enhance the firward thinking excellence of...
  24. S

    Embargo broken: Bristol University Professor to discuss trial of quack cfs tx

    I found the original leaflet telling people about the study - http://docplayer.net/42756002-Specialist-help-for-me-smile-specialist-medical-intervention-lightning-evaluation.html If not relevant or already published i will remove, haven't been able to look through all the threads
  25. S

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    but here are my notes from the other thread. Someone tried to get info on the financial aspects last year but results were not given because results were waiting to be published, might be time to revisit - https://m.facebook.com/notes/jan-van-roijen/crawley-quack-therapy/10154818274593322/ ...
  26. S

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    If as reported in the paper there are 1% of all school children that have ME this disease would be taken more seriously. Might be a good additional talking point to illustrate the errors in this study. And that the advertising standards authority ruled that adverts can't claim it is a cure.
  27. S

    NICE GUIDELINE ON ME/CFS WILL BE UPDATED! (Sep 20th 2017)

    I am still trying to get the minutes from these earlier discussions - it has been escalated now so hopefully these will be available soon
  28. S

    Early Day Motion (271) on the NICE guideline tabled by Stephen Timms MP:

    I am trying to out together a letter to send to my MP which gives more compelling information than the tiny paragraph that the one on the automatic generation does. I will send to Charles S when done and if he thinks it is worthwhile then MEA can share it.
  29. S

    Suggestions on How to manage organizing pills?

    Spice jars?
  30. S

    Tuller Blog on Comments from NICE's expert reviewers (via FOI request)

    NICE will be having a meeting to discuss it and the findings of the experts will be used in that meeting. The result from the experts is not the final say but is used by the rest of the committee to make a decision (so they told me). The meeting is internal only though as this is not an actual...