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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. K22

    Williams, White et al: PACE: Heterogeneity in CFS - empirically defined subgroups [...]

    They clearly believe those of us who believe are symptoms are physical and exacerbation could mean harm still have faulty illness beliefs. What is any non ME sufferer, say a skeptic dr going to surmise from this paper other than at least some of symptoms aren't physical and that if we say we are...
  2. K22

    Can you go from severe to moderate.

    Iim I'm 100% bedridden. On any CFS forum most will be mild-moderate In answer of course. My consultant said rapid onset severe tend to do better than the gradually detiorated ones like me because the immediate severity prevents the pushing on harm that seems to create more entrenched forms...
  3. K22

    For severe ME day, August 8th, mother of the late campaigner Emily Collingridge writes article

    I think that her mother Said they tried to take action but the hospital closed ranks etc. In the telegraph article the hospital statement was that they cared well for Emily bla bla.
  4. K22

    For severe ME day, August 8th, mother of the late campaigner Emily Collingridge writes article

    This isn't isolated bullying though, it's common NHS "care". The rehabilitation narrative and it's just CFS we can cure with graded activity you is pervasive, therefore anyone, however seemingly Ill the patient, can manage this as its not a disease, it's not that serious and so on. The CFS...
  5. K22

    For severe ME day, August 8th, mother of the late campaigner Emily Collingridge writes article

    I'm really sorry for your experience, I too avoid hospital at all cost, sometimes taking risks with my health but I'm sure that's typical for many at the severe end. I agree nothing's change but to be honest why should it have? I follow the ME field in the uk very religiously and rarely are...
  6. K22

    OMF Severely Ill Big Data Collection Completed

    The OMF believe that the severe have the strongest signals , not a separate illness. I am severe and it feels the same as a flare up when mild - moderate just 10 xs or much more worse impact so I think there is relevance to the other 75%, especially regarding the depth and breadth of the study...
  7. K22

    For severe ME day, August 8th, mother of the late campaigner Emily Collingridge writes article

    This was published in latest edition of the 25% group magazine and is available for sharing and awareness. It is a very moving piece & includes a description of the difficulties of Emily's last few months in a UK hospital and the inadequacy of her care. There's also original writing and poetry...
  8. K22

    Friedberg et al: Efficacy of two delivery modes of behavioral self-management in severe CFS

    As someone who is severe, probably way too severe to qualify for this study, I value this research for highlighting that just expecting many of the severe to improve significantly through pacing well alone is unrealistic. This should therefore drive attempts to look for medical not management...
  9. K22

    ****** !!!!!!!! ****************!!!!!!!!!!!!!!!! Junior version of PACE funded PI Dr Crawley

    I think that it is Good another missing millions protest is planned later in the year. Much to protest against in the UK, with the lack of research dollars and comprehensive stragegy to radically improve things in the uk another. If this was MS a single, poorly designed study exploring exercise...
  10. K22

    Pix/reports from the #Missing Millions protests today

    I think the #millionsmissing campaign is great First I'd like to thank All those who are attending the demos on our behalf and all who organised them. If anyone has press contacts now is the time to use them. I don't see what that big poster is making it clear what it's saying though in terms...
  11. K22

    CFS at British Association For Behavioural And Cognitive Psychotherapies (BABCP) conference 2016

    I don't have a problem with the psychological aspects of physical illness being explored in proper proportion & in proper context, although I think there's a worrying tendency to psychologise fatigue aspects in MS, sjogrens etc as well, I guess because it's not yet fully medically explained. The...
  12. K22

    CFS at British Association For Behavioural And Cognitive Psychotherapies (BABCP) conference 2016

    Can we imagine how helpful it would be if that other very fatiguing serious illness, MS, was treated in this manner?
  13. K22

    CFS at British Association For Behavioural And Cognitive Psychotherapies (BABCP) conference 2016

    This makes me so angry. I'm severely diababled, with multiple symtoms. Putting our illness On a spectrum with tiredness& talking about anxiety and emotions & mood :-(. Ignoring the vast wealth of other important things, like other symptoms, severity, biomedical research, drug trials.. &...
  14. K22

    ME/CFS Research (Dr Amolak Bansal) and Management (Dr Charles Shepherd)

    In reply to
  15. K22

    ME/CFS Research (Dr Amolak Bansal) and Management (Dr Charles Shepherd)

    The write up was advising exploring ways to get people with ME who are sick ,presumably if they're sedentary, to do more exercise (newly Ill people surely would not be having their pain and symptoms blamed on deconditioning?). I don't agree with that or resources going into that. Also adding a...
  16. K22

    Do all people with CFS commonly experience flu like symptoms

    I think the flueyness typically refers to feelings of infection/inflammation eg sore throat, stiff neck, aches, feeling rough, night & day sweats, sometimes low Grade fever etc. It's more than being knocked out, it's feeling unwell in a fluey way as if the bodies poorly & underseige. Research...
  17. K22

    ME Biobank (UK) opens for business…..

    This is the history of MRC involvement in brain banks I've just scanned. 3 were funded by the MRC to investigate the neurological affects of HIV in 1990...
  18. K22

    ME Biobank (UK) opens for business…..

    I thought the feasibility study on the post Mortem bank had been completed a while back and it was mainly lack of resources (which I'd have thought the MRC could provide) which was keeping us without a post-mortem tissue bank. http://bmcresnotes.biomedcentral.com/articles/10.1186/1756-0500-7-370
  19. K22

    UK CMRC AGM today - available to live stream

    It's it's heartening you are a voice there Keith I think naturally there's a different perspective on these things & the rate of progress etc from an academic point of view and me, a long-term severe in bed where it's seemed like watching paint dry since the formation of the ME expert group in...
  20. K22

    UK CMRC AGM today - available to live stream

    Love the suggestions for how they're encouraging debate :-) . It certainly wasn't at the presentation to the public yesterday & since the applications to attend CMRC patient sessions have to go through approval I don't think there's much room for anything other than cheering on the...
  21. K22

    UK CMRC AGM today - available to live stream

    It was very poorly advertised so I think only 20 people watched this presentation to the public The general message was everything is going good and that over the years even more good should start to happen - where patients are supposed to get a bit excited Patients weren't involved, it was a...
  22. K22

    "Suzanne O'Sullivan's It's All in Your Head wins Wellcome Book Prize 2016"

    Unlikely I think as Wellcome are very establishment, which rarely gets challenged, and also have a place now in the CMRC. There's an AGM today of the CMRC, I wonder if this will be raised if a wellcome rep is there... It's all very good to be potential funders on one hand but not OK for another...
  23. K22

    UK CMRC AGM today - available to live stream

    Copied from AFME Facebook The 2016 AGM of the CMRC will take place today (Wednesday 27 April) from 2.45pm to 3.30pm. If you're not able to attend in person and are interested in viewing the event you can watch it in real time via livestream at https://livestream.com/accounts/5490858/cmrcagm2016...
  24. K22

    Burrswood Hospital, Kent (UK) - new statement on in patient services for ME/CFS

    Wow, that's really surprising they're closing inpatient completely. So last years focus on the very severe being excluded was actually just the thin edge of what was to come really. I wonder why, as they didn't seem to have shortage of interest. That's sad news for the MEEPS who used the...
  25. K22

    Dramatic improvement in mental symptoms from melatonin dosed in the DAY

    I take melatonin at night and get a temporary short-term, marked boost mainly in brain fog which is my crippling symptom, it only lasts 1-2 hr - 1 hr though and doesn't last the next day. Melatonin also aids my sleep. I think the scientists doing research into potential treatments should...
  26. K22

    Canadian Institutes of Health Research "Catalyst Grant"

    I personally would advise Canadians not to settle for this. It's an insult to people who've been severely ill 30 years to have what in uk terms is around £130,000/ year - peanuts. We have had this" small start" stuff from the uk and it's not good enough. When you contrast the sum asked by...
  27. K22

    NIH post-infectious CFS study

    I as a UK patient welcome the Solve ME/CFS response and commitment to act on this. Why would they choose Reeves over Fukuda even? Is it because it's the weakest criteria available in the states. They need to add CCC too
  28. K22

    ****** !!!!!!!! ****************!!!!!!!!!!!!!!!! Junior version of PACE funded PI Dr Crawley

    https://ukctg.nihr.ac.uk/trials/trial-details/trial-details?trialNumber=ISRCTN23962803 I see here the NICE guidelines criteria are to be used for CFS & ME n the magenta trial. In fact they might as well be called the Esther Crawley criteria. I think those of us who've long urged for a...
  29. K22

    Does Esther Crawley’s latest research really tell us anything about prevalence of pediatric CFS/ME

    I think from Crawleys own perspective it gives a nice platform for her own work on fatigue in kids with a slight emphasis for further study on adverse life events & mood. As the blog says for Crawley its if the fatigue is really disabling which distinguishes for Her "CFS" from other fatigue...
  30. K22

    Prognosis according to CFS/ME working group (UK)

    I totally agree and also feel the "most" comment is weakly supported if the figure might be just over 50% & would prefer many. I'd assumed it was from stats of around 75%. If 52% of population voted conservative in the last election (they didn't) I wouldn't say that the British government has...