• 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. 2

    Dr Phil Hammond talks to Jen Brea about Unrest this morning on Radio Bristol

    I just listened and thought she did a great job when he waffled. It seems he's not clear on the problems with the research, or maybe he is but he has to toe the party line. He did concede that more research is needed in general, and also mentioned the severely affected in particular. The film...
  2. 2

    Video by Dr Myhill: Time to stop the abuse of CFS patients

    having heard Sarah speak a couple years ago, I remember how fast she spoke, would have left many listeners in the dust. As I don't have ME I was fine, but I did wonder if some would have struggled to follow. I would encourage her to slow down massively-- it can be done, just needs some practice.
  3. 2

    NHS Bristol on 'Management of somatoform disorders' - read this and weep.

    Might someone who lives in the area raise it with their MP? It's a total embarrassment, the serious typos, even before the disrespect for patients surfaces.
  4. 2

    MEA hear back from NICE about the identity of ‘topic experts’ | 13 August 2017

    We need to be careful our figures are accurate. I don't think the data support that 'hundreds' have been taken into care. Probably only a handful at most. Many more threatened, as Tymes trust reports, but where are the stats? (I say this as a parent, whose school raised the question of legal...
  5. 2

    Guided Self-Help for Patients with CFS Prior to Starting CBT: a Cohort Study

    Hi @Sad Dad when my son fell ill we were referred back to the paediatrician who had seen him during his previous stage of chronic and severe headaches (with intermittent spells of feeling very poorly) within four months. She diagnosed him and said he needed to 'exercise', that would help him get...
  6. 2

    Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood

    Ditto! By the time we got to the 3rd paediatrician (no fault of ours) all we needed were the all important letters for school, which were then disbelieved. By then we had worked out management ourselves. I do remember phone calls regarding keeping child benefits for my ill children doing part...
  7. 2

    Esther Crawley - Special Educational Needs - 21st September 2017

    Thanks, very much.
  8. 2

    Esther Crawley - Special Educational Needs - 21st September 2017

    Tymes Trust would be interested and might well be able to give input to the organisers. I get very cross at EC's sloppy definition of the condition. If only mine had only missed a day per week in school. my son was out of school completely for nearly 3 years before he began easing back in with...
  9. 2

    Crawley: How to deal with anti-science BRS2017

    One can view accounts for any charity that gets over £10k in income on the Charity Commission site. The search function is poor, so easier to use th charity number, which for AFME is 1036419 (any registered charities will have this number on their website somewhere). From the accounts, I see...
  10. 2

    Crawley: How to deal with anti-science BRS2017

    Just to say I've had a response from World Vision UK thanking me for letting them know about EC's use of their photo and their communications and legal teams will be investigating the matter.
  11. 2

    Determined to walk on her wedding day

    Thanks @Cinders66 for more background. I watched the story and noticed that although she managed to walk with support down the aisle and back, she then went straight back into the wheelchair afterwards. In one other shot where she was standing, I noticed someone's hands around her waist...
  12. 2

    Crawley: How to deal with anti-science BRS2017

    Too true, @Esther12 I can assure you I was very measured and focused only on the one photo, nothing about the gist of the talk, which I know others have taken up with her, or even the other photo, since the person behind that photo is already aware of the issue. It happens I used to work with a...
  13. 2

    Crawley: How to deal with anti-science BRS2017

    On further reflection I decided to write EC herself about using the World Vision photo, as it made me very angry. I've now done so, suggesting she apologise and send a generous donation towards their work in Armenia. I decided to copy World Vision Armenia and world vision U.K., so they are aware...
  14. 2

    Crawley: How to deal with anti-science BRS2017

    This photo, thanks @Luther Blissett , isn't even from this country, as far as I can tell. Any more than the tennis champion photo, which we know is from a US site. ETA, thanks @Forbin for finding the source of the photo. (Might someone wish to let World Vision know someone has misused their...
  15. 2

    Crawley: How to deal with anti-science BRS2017

    In a past life in a country far away, I worked one summer on the till in a pharmacy in a medical uilding with all sorts of doctors offices, including a dialysis clinic. Those patients were regulars in our pharmacy as most were on multiple prescriptions, and it became apparent to me very quickly...
  16. 2

    "Young people have a better chance of recovery", how much do we know about this?

    That's pretty much what I did, my middle one was out of school for nearly three years, and then eased back in very slowly.(He had other provision to cover basic subjects during those years.) This 'take it slowly' approach didn't go down well with the school, and we came close to them taking...
  17. 2

    "Young people have a better chance of recovery", how much do we know about this?

    Just wanted to give the reference for the more general paper: https://academic.oup.com/qjmed/article/90/3/223/1633580/The-prognosis-of-chronic-fatigue-and-chronic Hope this link works, if not, please will someone fix it?! When I first saw this paper and noticed who the third author is (Sir...
  18. 2

    "Young people have a better chance of recovery", how much do we know about this?

    Ther have been a couple papers on recovery in children/ young people. One was dr bells 13 yr follow up, another looked at recovery rates from 3-4 us clinics in the 1990s, if you put them all together the recovery rates are positive for overall improvement but not stunning, very few totally...
  19. 2

    Feature on ME from South-Africa with among others Davis & Tuller

    Amazing piece, well done to the young journalist! I've shared it on FB.
  20. 2

    PACE Trial and PACE Trial Protocol

    Yeah, I noticed that as well, a quick proofread would not have gone amiss!
  21. 2

    ill person represented fairly on BBC news website

    I'd read this and missed what section it's in. Thanks for pointing that out Tired Sam. It will be interesting to see if larger studies confirm long-term benefit for many, or for a subset only. I understand there are different varieties of MS, so that needs to be considered. The cost alone...
  22. 2

    Crawley: Natural course of CFS/ME in adolescents

    If it isn't about cfs/me, then why lure readers in with that in the title?!
  23. 2

    Who are the 10% that get better

    @nikefourstar my children seem to have recovered after 6 years for my son, he's now been well for about 6 years, and after about 3.5 years for ny daughter, she's now been well for about two years. Are they 100%? Maybe not, but at 90% they can get on with life at university. Will they relapse...
  24. 2

    UK thoughts please

    I too saw Bateman's talk about he NASA stand test, which seems to be easy to administer and doesn't require special equipment, only a longer appt time. Would make so much sense to test everyone suspected of ME/CFS as it would help identify POTS in an objective way -- and might help to persuade...
  25. 2

    UK thoughts please

    Hi @Braveheart, I'm in a different area so can't comment on local clinics. In my experience, with my children, a supportive GP can be really helpful. If you have one you are indeed blessed! If not, then I'd suggest that a local or nearby support group may have contacts or suggestions. MEA...
  26. 2

    The PACE trial: where "recovery" doesn't mean getting your health back

    Dr David Bell in the USA, who has followed the illness for some 30 years, maintains that about 5% fully recover. A lot of people do improve, and/or perhaps are able to manage it so as to have some 'life'. It's so unpredictable, almost certainly there are different variations which might explain...
  27. 2

    Countess of Mar's Formal Complaint to the BBC

    I've finally Looked up more about her, Wikipedia has an article, but you need to search for Margaret of Mar. Very interesting history, she fell ill after splashing organophosphate sheep dip on her foot in 1989. We lived in South Asia when my children were small, where there was no effective...
  28. 2

    Countess of Mar's Formal Complaint to the BBC

    Measured and thoughtful response by the countess of Mar, what an amazing advocate! I await the next instalment of this saga....
  29. 2

    Countess of Mar's Formal Complaint to the BBC

    The mind boggles!, curiouser and curiouser. Best wishes to both the family involved and to the Countess in her complaint.
  30. 2

    Investigating using FITNET to treat paediatric CFS/ME in UK (FITNET-NHS)

    Just to clarify, OMEGA (Oxfordshire ME Group for Action) has been around for nearly 30 years, and is not related to the Opposing MEGA group, which has (unfortunately) picked up the same acronym for their campaign. We publish a newsletter 4x yearly, lobby on various fronts (improved services for...