• 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. Esperanza

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

    Are you aware of Sue Pemberton, Specialist OT & the Yorkshire Fatigue Clinic based in York. Sue is my ME OT, has worked with ME patients for over 25yrs in Yorkshire & does home visits, telephone consults & Skype consults where required. She sees patients from 13 upwards & does NOT endorse GET...
  2. Esperanza

    Help for the bedbound and severe

    Some of us are lucky enough to be/have been under the care of Specialist OT Sue Pemberton @ The Yorkshire Fatigue Clinic http://www.yorkshirefatigueclinic.co.uk/. She has had many homebound, bedbound severely affected patients & has been able to advocate for patients vis a vis GPs, SS, DWP...
  3. Esperanza

    BBC Radio 4: Children with ME

    No, you are not in the minority. I agree totally & think the programme, good in parts could have been much better & was a missed opportunity. Why on earth did the journalist go to interview researchers at the Invest in ME conference if he wasn't going to hammer home the fact that there is a lot...
  4. Esperanza

    Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Crawley

    Have you read the statements of two of the three PAG members who resigned? https://spoonseeker.com/2017/03/24/4210/ https://spoonseeker.com/2017/04/04/my-perspective-on-the-mega-pag/
  5. Esperanza

    MEGA and PAG website update (March 29th 2017)

    Delighted to hear Wellcome Trust turned MEGA down for funding. The latter acted like it was a foregone conclusion that they would get the funding! This in itself was rather interesting.... What a blow that must have been to EC's ego.... I wonder if MEGA have now applied for the MRC bioresource...
  6. Esperanza

    Petition: Opposing MEGA

    I am reliably told that the two other resigned PAG members will,be posting their resignation reasons in due course....!
  7. Esperanza

    Leeds ME/CFS clinic (UK)

    I assure you this is NOT about exercise despite the misleading name, if that is what you were wondering. It is about finding your baseline to stabilise whatever level of health you have. In my case, being severely affected, this means doing the absolute minimum & getting carers & help in to...
  8. Esperanza

    Leeds ME/CFS clinic (UK)

    Not sure if you are talking about the Yorkshire Fatigue Clinic...? The staff will be very aware of Rituximab but they do not as yet provide medical treatments for ME. What they do provide is individualised condition management & support. I am quite sure Sue Pemberton who runs the clinic will be...
  9. Esperanza

    Recording of Esther Crawley inaugural lecture on February 24

    Ha! Yes, I did interpret it as the MEGA team, probably becuase I really do NOT want the MEGA thing to go ahead, not in its current form, anyway... I think EC probably did mean her Univ team...but ambiguity & fudging issues, statistics & detail in general, seem to be her hallmark. I think she may...
  10. Esperanza

    Recording of Esther Crawley inaugural lecture on February 24

    Yes, i was wondering that, too. All along I have been baffled by the fact that she is spearheading the MEGA juggernaut involving 10,000 adults (as well as the 2000 kids) despite the fact that she is a Paediatrician & has not worked iwth adult patients. As for the rest of the research team, I...
  11. Esperanza

    Recording of Esther Crawley inaugural lecture on February 24

    Too many people are afraid of EC et al. Got this from someone too afraid for his career to stand up to her... We need more straight-talking people like Prof J Edwards with his recent message to EC...
  12. Esperanza

    Recording of Esther Crawley inaugural lecture on February 24

    Good! .... Listening to this 'lecture' reminds me yet again why I voted for OMEGA & why I hope that MEGA doesn't get its funding...
  13. Esperanza

    Petition: Opposing MEGA

    Just wondering whether there is any news yet of the funding bid for the biobank?
  14. Esperanza

    Leeds ME/CFS clinic (UK)

    @Cap413 the ME Association produce a very useful 'purple booklet' about ME which includes research summaries & medications that can be useful in ME ie symptomatic treatments. The booklet is alao very useful to show friends, family & GPs that ME is a serious physical condition that should be...
  15. Esperanza

    Leeds ME/CFS clinic (UK)

    @Cap413 Good luck getting a referral to the YFC. You will need to make your case for this vis a vis the CCG as the default sytem is to send you to the Newsam Centre @ Seacroft if you live in Leeds. Might depend on which part of Leeds you live in ... There is virtually no waiting list for home...
  16. Esperanza

    Leeds ME/CFS clinic (UK)

    @katiecupcake I think one of the mistakes people can make when talking about the clinics or doctors etc is to assume that everyone is like you. As I have said previously I have never had anxiety or depression with my ME & do not wish to be categorised as a mental health patient when my...
  17. Esperanza

    Comment by 'Esperanza' in 'This week is my 28th anniversary of becoming sick (aka "sickaversary") with ME/CFS'

    Thank you for all the good stuff you do, Tom, to inform the ME community & beyond about what is happening in the world of research etc. Sorry to hear that it's your 28th anniversary... The end of January saw my 37th anniversary. I am now in my early 60s and have all the problems of abeing as...
  18. Esperanza

    Leeds ME/CFS clinic (UK)

    @Cap413 Well, for what it''s worth, Cap413, i will add in a few comments about the LEEDS services. I have used the Seacroft Newsam Service Outpatient years ago but had the good fortune at that time to be under the care of Sue Pemberton who headed up the OT side of the service. She is...
  19. Esperanza

    New MEGA study website (30 November 2016)

    According to MERUK one of their trustees, Jan McKendrick, will be part of the assessment team.
  20. Esperanza

    New MEGA study website (30 November 2016)

    I am utterly baffled by this question of anonymity for PAG applicants. How on earth can it be remotely sensible for applicants to be chosen without those on the selection panel knowing who they are....at some point, at any rate? If AfME (who, after all, are one of the least trusted ME...
  21. Esperanza

    New MEGA study website (30 November 2016)

    Just wondering whether anyone on here, having read the patient advisory group criteria, feels inclined to put their time & energies into applying to be on the group. If we are desperate to make sure that this trial is not done badly, is it better to try to change things from within the 'tent' or...