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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. elliepeabody

    Request for NOD-DERS: Could your data be part of the NOD (National Outcomes Database of UK ME/CFS

    Yes I was asked to complete these forms back in 2015 although I had no idea they were part of NOD or that the data would be shared further. Funnily enough I only found out they were part of NOD a week or so ago....it came up as a response to queries sent to the service about something else...
  2. elliepeabody

    UK: Norfolk & Suffolk NHS ME/CFS center goes biomedical!!!

    Well, an update for you all. Limited as always in what I can say but no doubt you can read between the lines. Commissioning in Suffolk has issued a 'Prior Information Notice' seeking expressions of interest from Providers to deliver a biomedical consultant led service...
  3. elliepeabody

    UK: Norfolk & Suffolk NHS ME/CFS center goes biomedical!!!

    If you are interested a more detailed summary of what has happened regarding service development to date has been posted on our website. http://nandsme.blogspot.co.uk/p/the-story-so-far.html Feel free to comment!
  4. elliepeabody

    UK: Norfolk & Suffolk NHS ME/CFS center goes biomedical!!!

    Another update. A lot of work has been done in the past year. A consultant has expressed an interest in leading and developing the service. I am not able to say who this is, but the Patient / Carer Group is delighted that this person is interested. A feasibility study was undertaken in the...
  5. elliepeabody

    UK ME/CFS Research Collaborative (CMRC) Annual Science Conference 2016

    Prof Jones is an immunologist treating patients with the liver disease PBC. Symptoms include fatigue, sleep disturbance, cognitive disturbance and ANS dysfunction. Prof Jones described the lessons learnt from research into the disease. Name changed by patient power. Importance of listening to...
  6. elliepeabody

    UK ME/CFS Research Collaborative (CMRC) Annual Science Conference 2016

    I think the MRC segment was very much a 'blame the victim' exercise. Unedifying to watch. The ICO tribunal decision was very disparaging of the 'harassment' claims, but weeks later they are still raked up.
  7. elliepeabody

    UK ME/CFS Research Collaborative (CMRC) Annual Science Conference 2016

    This 63% & 8% may come from FITNET http://www.nets.nihr.ac.uk/projects/hta/14192109 Think this maybe the study http://www.meassociation.org.uk/2012/03/two-third-of-youngsters-with-cfs-reporting-recovery-after-receiving-web-based-therapy-say-dutch-researchers/
  8. elliepeabody

    UK ME/CFS Research Collaborative (CMRC) Annual Science Conference 2016

    It's pretty scary stuff and a good insight into the way that the 'research' into GET for children is approached. EC said no evidence of harm. Study of mild/moderate who could attend clinic. Children & YP like GET and ask for it, recommended by NICE for adults, need to be certain it is...
  9. elliepeabody

    UK ME/CFS Research Collaborative (CMRC) Annual Science Conference 2016

    I was watching the stream and I don't know who raised the issue of 'hassle' of researchers but it was mentioned during the MRC presentation. Someone from ME Research UK pointed out that none of their researchers had been subject to 'hassle'. I think the atmosphere was a bit strained at this...
  10. elliepeabody

    UK ME/CFS Research Collaborative (CMRC) Annual Science Conference 2016

    If anyone is interested Sonia Chowdhury told me via twitter that Dr Julius Bourke on the neurophysiology of pain wasn't streamed earlier this morning because the talk included sharing unpublished data. Summary to be included in Conference report out in a few weeks. Dr Bourke is a consultant...
  11. elliepeabody

    James Coyne: Before you enroll your child in the MAGENTA chronic fatigue syndrome study:

    Thanks for the extra info re the LP @Wildcat. Just a quick update, James Coyne contacted me a little while ago to let me know he has now updated the blog. Under the jpeg including the logo's of NHS Suffolk and NHS Northern Ireland he has now added the text This is much better than the...
  12. elliepeabody

    James Coyne: Before you enroll your child in the MAGENTA chronic fatigue syndrome study:

    Just to update this thread. I have heard back from James and he has said he is not inclined to amend the post to remove the NHS Suffolk logo because: This is very disappointing especially as Suffolk Commissioning (Ipswich & East Suffolk and West Suffolk CCG's) have been so supportive of the...
  13. elliepeabody

    James Coyne: Before you enroll your child in the MAGENTA chronic fatigue syndrome study:

    Blog about issues for parents to consider http://blogs.plos.org/mindthebrain/2016/09/23/before-you-enroll-your-child-in-the-magenta-chronic-fatigue-syndrome-study-issues-to-be-considered/ James discusses the LP (SMILE study). I've asked James to remove the reference to NHS Suffolk as NHS...
  14. elliepeabody

    Looking for Ideas to Improve Primary Care of ME/CFS - Health Foundation Project

    A very interesting thread. As some of you may recall I am involved in developing local services in Norfolk and Suffolk. Progress is being made albeit very slowly. This is the thread - I haven't updated it recently as what is being worked on is commercially sensitive...
  15. elliepeabody

    Functional Assessments for Pre-Clinic Review - Advice please

    Thanks for your detailed thoughts @taniaaust1 (sorry for the delay in response, yesterday I was working on the paperwork for meeting tomorrow). I agree that tick boxes for symptoms, including severity is a good idea, which is where something like Bernes or the ICC symptom list could come in...
  16. elliepeabody

    Functional Assessments for Pre-Clinic Review - Advice please

    @Valentijn thank you for your thoughts. Part of the problem is that it is not really clear how useful the clinical staff find the information that is gathered. My initial reaction on being presented with the forms is that the Chalder Fatigue Scale and the HADs aren't really useful. Not sure...
  17. elliepeabody

    Functional Assessments for Pre-Clinic Review - Advice please

    Thanks for your thoughts @hellytheelephant. Like you I found filling in the forms a real pain, in fact the HADs one I refused to fill in - Just said 'I'm not anxious or depressed' on the bottom. It didn't help that the form was badly photo copied and the boxes kept jumping around on the page as...
  18. elliepeabody

    Functional Assessments for Pre-Clinic Review - Advice please

    As some of you may recall our Patient / Carer Group is working with Commissioning and the Provider to improve our local service. One of the areas we are looking at is the Pre-Clinic Questionnaire and the Pre-Clinic Functional Assessments. I am waiting on the Service for their review of the PCQ...
  19. elliepeabody

    Help please: feedback on awareness info for GP's

    Thanks for the update on this @charles shepherd Will the A4 summary sheet be available to order separately?
  20. elliepeabody

    Help please: feedback on awareness info for GP's

    @eafw Commissioners want something brief that they can present to GP's within say 5 minutes at their 'speed dating' training. But this is only CCG's in Suffolk. The service covers 7 CCG's and they all carry out GP training/awareness differently. We have to start somewhere though. My hope is...
  21. elliepeabody

    Help please: feedback on awareness info for GP's

    @ithought Thank you for your good wishes. I have arranged for the Purple Booklet to be delivered to my local GP practice through the MEA's excellent scheme. Unfortunately it doesn't seem to have had any impact. The phrase ME or CFS has yet to pass my GP's lips! (To be fair it's not what I...
  22. elliepeabody

    Help please: feedback on awareness info for GP's

    @Jonathan Edwards thank you very much for your constructive suggestions and offer of support. As @ithought says the Purple booklet is very good, but the challenge is to put something together that Commissioners will accept as brief enough to deliver to GPs, yet remains genuinely useful. Also...
  23. elliepeabody

    Help please: feedback on awareness info for GP's

    @JaimeS thank you for the link. I hadn't seen that before. Very clear and well laid out, it will be useful, I especially like that you have linked to recent research. I saw this on twitter this morning which is interesting, pain control is so often overlooked by GP's...
  24. elliepeabody

    Help please: feedback on awareness info for GP's

    Thankyou for digging up the link @BurnA :cool: When I was drafting up the document I had in the back of my mind that I had read something of the like somewhere, but couldn't remember where. I agree that patients shouldn't have to wait 6 months for diagnosis - by that time many will have lost...
  25. elliepeabody

    Help please: feedback on awareness info for GP's

    Thanks for your kind words and encouragement @sarah darwins :)
  26. elliepeabody

    Help please: feedback on awareness info for GP's

    First I want to say a big thank you to you all for taking the trouble to give such detailed feedback. I don't have a medical background (which obviously shows) and haven't done anything like this before, so the documents are bound to need revision. I did refer extensively to the ICC and CCC...
  27. elliepeabody

    Help please: feedback on awareness info for GP's

    Many thanks for the feedback @sarah darwins , much appreciated, have made the adjustments you suggested. I find that I get to a point on these documents that you can't see the wood for the trees! Also have tweaked the other document following feedback from another group member, would be great...
  28. elliepeabody

    Help please: feedback on awareness info for GP's

    Commissioners have asked our Patient/Carer group to put together some GP awareness material to be disseminated at the CCG Training sessions. We were asked to be brief (Commissioners know me too well!) So what we have done is put together a couple of mind maps (and I will also include a sheet of...
  29. elliepeabody

    Coyne - What it takes for Queen Mary to declare a request for scientific data “vexatious”

    I'd say it's possible as the Intervention Review also cites the research it did not include in the review. There is also a Intervention Protocol - Exercise therapy for chronic fatigue syndrome (individual patient data) which they might also be referring to...
  30. elliepeabody

    Coyne - What it takes for Queen Mary to declare a request for scientific data “vexatious”

    I'm not sure if this is relevant but I found this 'Intervention Review of Exercise Therapy for CFS' (published 10/2/15) on Cochrane website which uses PACE as one of the studies the review is based on...