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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. potbatch

    Leeds ME/CFS clinic (UK)

    I agree totally with what you say, Snowdrop. Just to clarify: over the years, the Leeds outpatient clinic have not bought in to the deconditioning theory of ME. The focus has been on helping patients get out of the cycle of 'boom and slump' by teaching something which is very similar to what we...
  2. potbatch

    Leeds ME/CFS clinic (UK)

    Many thanks for leaving this feedback. I'm involved with the Leeds patient support group (Leeds ME Network https://leedsmenetwork.yolasite.com/ ) and it's rare that we get feedback about the local clinics these days so this is very helpful. Thank you. Your experience of the inpatient clinic...
  3. potbatch

    New MEGA study website (30 November 2016)

    So they are using the FITNET child advisory group, the same group which decided it was OK for Crawley to say she was using the NICE entry criteria for FITNET even though she wasn't. (She got rid of the requirement for PEM!) The same advisory group which also decided it was OK for kids on the...
  4. potbatch

    Petition: Opposing MEGA

    Apparently the children's advisory group is going to be the same one as for FITNET. So that's the same group that said it was OK for them to say they're using the NICE entry criteria even though they're not (because they removed the necessity of PEM) and the same group that said it was ok for...
  5. potbatch

    Petition: Opposing MEGA

    I made this reply to Prof Holgate (including some observations on FITNET). Haven't heard back from him yet. https://spoonseeker.com/2016/11/28/fitnet-fiction/ Potbatch aka Spoonseeker
  6. potbatch

    Petition: Opposing MEGA

    Please excuse me butting in but just want to give my thanks to those PR members who signed an email to Stephen Holgate to help him address his 'perplexity' about the OMEGA petition. Copies have also been sent to the rest of the MEGA team (or at least those who keep their online contact info up...
  7. potbatch

    Petition: Opposing MEGA

    Here's the proof: a link to the broadcast (on 5/11/16) where Esther Crawley calls PACE 'a great, great trial'. http://www.bbc.co.uk/programmes/p04cd54b#play She goes on to say: 'they did as good as anybody could have done'. The interview starts at about 8-40 but if you want to cut straight to...
  8. potbatch

    WE HAVE A LETTER

    I'm a relative newcomer here so if I'm butting in inappropriately please forgive (and ignore) me. But we do seem to be getting further away from finalising this again. In the interests of trying to move things along, perhaps the group could take a vote to choose between one of two versions to...
  9. potbatch

    WE HAVE A LETTER

    Would it be possible for eafw to go through the draft and purge it of (or highlight) anything which has crept in that you think is inappropriate? If we don't call for removal of White and Crawley then I think we do need to think very carefully about what we want to say in Section 3.
  10. potbatch

    WE HAVE A LETTER

    So if the sentence were changed to 'the 25% Group might provide some severely affected patients' would that be more realistic?
  11. potbatch

    WE HAVE A LETTER

    Yes, Jan, I would support mentioning fatalities.
  12. potbatch

    Leeds and West Yorkshire CFS/ME clinic

    Yes, the people at YFC used to be at Seacroft. Sue Pemberton worked at Seacroft for twenty years or more and during that time she built up a good understanding of ME by actually listening to patients. Then about five years ago they got rid of her to save money - and also, I suspect, because she...
  13. potbatch

    WE HAVE A LETTER

    I'm going to be very disloyal to myself and vote that we work on Countrygirls's version please. Some of the sentences are indeed too long (especially in the second half of the PACE section) but that should be easily fixable and the overall gist of sections 1 and 3 (where she has made most of the...
  14. potbatch

    WE HAVE A LETTER

    Here's another revision based on JamieS's revision! Just to explain in advance: Intro has been changed to reflect the comment by Barry53 on grammar. Section 1: eafw has pointed out the inconsistency in supporting big data but then suggesting a sample of only 1000. I totally agree. However this...
  15. potbatch

    WE HAVE A LETTER

    Great revision by JaimeS. I just have a minor suggestion. eafw suggests citing Jonathan Edwards. Penultimate para of JaimeS's section 1 could be replaced with: Prof Jonathan Edwards remarks: "I am tempted to think that a sample of 1,000 well selected cases would be much more reliable. In...
  16. potbatch

    WE HAVE A LETTER

    We could also use: Prof Malcolm Hooper says: "The PACE trial had to assess 3,158 individuals to find 641 who met the broadest definition of "chronic fatigue" (the Oxford criteria) and who were willing to participate in the study. If the same ratio applies in MEGA, then about 60,000 people will...
  17. potbatch

    WE HAVE A LETTER

    We could include the following in what is currently section 1: Prof Jonathan Edwards has commented: "Particularly in relation to genetic studies a sampling of patients from NHS clinics looks to me to be fraught with problems. NHS CFS clinic specialists vary widely in their interpretation of...
  18. potbatch

    WE HAVE A LETTER

    Re Crawley, it is worth drawing attention to a very sloppy piece of research she did as regards patient selection. In her ‘CFS at age 16’ study, she included patients on the strength of simplistic questionnaires about ‘feeling tired’ and there was no doctor involved to exclude other conditions...
  19. potbatch

    The New MEGA poll

    Thanks for this. Would it be worth adding 'please tick all that apply'? As it stands, I've ticked to exclude all BPS researchers. Uncertain whether I also need to tick seperately to exclude White and Crawley. So may make results hard to interpret. Similarly, if I tick for patient involvement at...
  20. potbatch

    How much will MEGA cost? And an alternative proposal.

    I tweeted about your idea and lots of people tweeted and liked including the ME Association.
  21. potbatch

    How much will MEGA cost? And an alternative proposal.

    I think your suggestion makes perfect sense, which MEGA doesn't. And I think AB has hit on the cunning plot behind it: People have been asking what's in it for Crawley. But as you say there's plenty enough money for some psycho questionnaires and the bio samples will throw up nothing useful...
  22. potbatch

    MEGA 'Why broad definition should be used as a starting point - by Prof Stephen Holgate'

    We received swift (but brief) replies from Prof Holgate of CMRC and Sonya Chowdhury of Action for ME in response to the email in the above blog. Full details here: https://spoonseeker.com/2016/10/15/some-response-from-mega/ There's a bit of good news. Holgate says "I am already aware of a...
  23. potbatch

    Leeds ME/CFS clinic (UK)

    The immunologist, Dr Philip Wood, is no longer at the clinic, but you can get a referral directly to him at St James's. http://www.leedsth.nhs.uk/consultants/dr-philip-wood
  24. potbatch

    "Closing the Door on Freedom" (May 1)

    Yes, there is still a right of appeal. It has to be made within 28 days of the refusal notice. I mentioned your comment in my latest post. It just seems to be quoted as an example of general hostility towards the PACE authors! They accept that it's nothing to do with FOI so it's not really...
  25. potbatch

    "Closing the Door on Freedom" (May 1)

    Hi - Potbatch aka Spoonseeker here. Many thanks to Dolphin for all the quotes from my blog post. Thanks, too, to Chrisb for the above remarks. I feel that I did deal with most of the points which chrisb raises in my post but I think he is right to raise this as a very important issue. Whether...
  26. potbatch

    Leeds ME/CFS clinic (UK)

    Hi Katie, Very interested to hear about your getting a private Gp in Leeds & wonder if you can give me any details about how you managed this. Would be very useful to be able to consult a GP privately especially as NHS GP is always so busy, distracted etc. Many thanks :)
  27. potbatch

    Ongoing Immune Reaction - Shingles

    I would just like to thank everyone who left information in response to my post about my wife's condition. All very much appreciated. We were especially interested to hear about Mollanet's Meningitis which seems like a possibility here and is something we can raise with the doctors. Thanks to...
  28. potbatch

    Ongoing Immune Reaction - Shingles

    We can certainly relate to this experience. Many doctors consider that patients who keep copious records of what is going wrong with them to have 'health anxiety'. It is very difficult for a patient with ME to get taken seriously by an NHS doctor.
  29. potbatch

    Ongoing Immune Reaction - Shingles

    Many thanks for your info and good wishes. Much appreciated.
  30. potbatch

    Ongoing Immune Reaction - Shingles

    Our experience of the private sector, including Dr Myhill, has been rather more positive. Thanks for your advice nevertheless and it makes us think that perhaps we should give the immunologist another chance. My wife did see one a few months ago. She was given some basic tests then sent away...