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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. Cinders66

    Thread for discussion of the research aspect of the UK DHSC interim delivery report, out for consultation until October.

    Controversy and criticisms Of the Medical research council strategy/ activity pre 2013 The five studies that received ring-fenced funding 2012 The fatigue study was actually primarily on a sjogrens cohort, which was presented to patients as still very worthy but the controversy was somewhat...
  2. Cinders66

    Thread for discussion of the research aspect of the UK DHSC interim delivery report, out for consultation until October.

    The Medical Research Council ME/CFS funding call of 2012 In 2011, the MRC ME expert group finally published its 6 identified priorities and put out a funding call with set-aside funding. Identified priorities were quite broad based or vague, depending on perspective: Autonomic dysfunction...
  3. Cinders66

    Thread for discussion of the research aspect of the UK DHSC interim delivery report, out for consultation until October.

    From 2006-2012 there was a conference, an MRC collaboration group set up and meetings & workshops. The main focus was on how to encourage research and what research priorities should be. The below summaries are copied directly from the archive of past activities link below, Notes from group...
  4. Cinders66

    Thread for discussion of the research aspect of the UK DHSC interim delivery report, out for consultation until October.

    The MRC response to ME, since the publication of 2002 chief medical officers report. The Medical research council 2003 CFS/ME strategy, requested by the chief medical officers report, was Published. It is a lengthy document...
  5. Cinders66

    Thread for discussion of the research aspect of the UK DHSC interim delivery report, out for consultation until October.

    Quite and that’s a) a scandal b) all the more reason why this effort not only has to be significant and meaningful but grand enough to make up for the obscene waste of time/opportunities/lives, rather than scratching about getting started.
  6. Cinders66

    Thread for discussion of the research aspect of the UK DHSC interim delivery report, out for consultation until October.

    In 2006 another review/inquiry, this time by MPs and Lords, lead by Dr Ian Gibson MP & known as The Gibson Enquiry, full report: http://www.erythos.com/gibsonenquiry/docs/me_inquiry_report.pdf The Research section said: In the general conclusion the report said: Their section on...
  7. Cinders66

    Thread for discussion of the research aspect of the UK DHSC interim delivery report, out for consultation until October.

    Relevant background information - the decades UK long struggle for ME research, recognition, progress and accountability. Key moments:- 1998 - attempt to pass a bill in parliament to monitor ME research progress - in the pre Chronic Fatigue syndrome days. Transcript available Myalgic...
  8. Cinders66

    Improving the Experiencing of People with ME:Department of Health and Social Care: SURVEY for UK residents linked below, please respond.

    I’VE started a new thread specifically on the the research side of DHSC. Going to put all the Background stuff I think is relevant and then it can be added to, discussed and shared on other social media. Doesn’t seem to be anywhere else this is getting open debate which mystifies me When it’s...
  9. Cinders66

    Thread for discussion of the research aspect of the UK DHSC interim delivery report, out for consultation until October.

    Background & information provided by the DHSC prior to release of the draft of the delivery plan for consultation https://forward-me.co.uk/wp-content/uploads/2022/09/MECFS-Public-Comms-FINAL-17-8-22.pdf
  10. Cinders66

    Thread for discussion of the research aspect of the UK DHSC interim delivery report, out for consultation until October.

    Statements on the DHSC interim delivery plan by U.K. charities ME Research UK released a generally positive statement on August 10th. The ME association statement August 10th. Action for ME Sonya Chowdhury August 9th said: Welcoming the publication, our CEO, Sonya Chowdhury said:
  11. Cinders66

    Thread for discussion of the research aspect of the UK DHSC interim delivery report, out for consultation until October.

    Hi , I just wanted there to be a thread specifically for this important topic and a place where people can post thoughts, ideas, questions etc. I certainly have many. A good place to start is the analyses and blog from ME research UK, who consider what is being Offered and say it falls short...
  12. Cinders66

    Improving the Experiencing of People with ME:Department of Health and Social Care: SURVEY for UK residents linked below, please respond.

    I asked the MEA about the new position from ME research UK . Dr Charles Shepherd replied
  13. Cinders66

    Improving the Experiencing of People with ME:Department of Health and Social Care: SURVEY for UK residents linked below, please respond.

    Really important new (18/08) critique from ME research UK of the research part of the DHSC plan out for consultation, that claims it will deliver but in key ways MERUK argues actually doesn't #mecfs #seid #severeME My full reality: the interim delivery plan on ME/CFS – Our response part 1...
  14. Cinders66

    The Guardian Today: Chronic fatigue guidance discouraging exercise is flawed, say researchers (Wessely, White, Sharpe, Chalder, Per Fink et al)

    Of the uk names from that list, 4 - Peter White, Alistair Miller (Action for ME medical advisor until 2016), Mark Edwards & Paul Little were sitting on the the uk CFS/ME research collaborative for at least some time - the first two just the earlier years. I’m surprised Gabrielle Murphy, who...
  15. Cinders66

    completely bedridden, eating in the stomach leads to a crash

    I’m tube-fed but for swallowing dysfun rather than digestive. Doctors and dieticians need to be consulted. it is something that seems Q common If you have an HR monitor this might “verify “ The difficulties her body experiences, i don’t know.
  16. Cinders66

    The All Party Parliamentary Group on ME launch their new report, Rethinking ME, today

    Is there any other format please. For me on iPad if I copy the text it pastes it backwards?
  17. Cinders66

    Chronic Fatigue Syndrome: The Need to Raise Awareness

    I’m from the U.K where we have Chronic Fatigue Syndrome as A catch all for everything fatigue up until recently and some groups saying there’s a 1-2% prevalence, so if anything There’s too many diagnosed. . I’m intrigued how in the US, when even patients who have been fobbed off now have google...
  18. Cinders66

    Poll: When do you brutally honestly think there will be a cure for ME?

    which we haven’t fully identified yet have we (noting the metabolic trap reference above) I don’t know what I can give to a dr to explain or show why I’m so severe. When we do identify it, it might be frightening, but there is the fact that some people who exhibit severe ME in The first two...
  19. Cinders66

    Poll: When do you brutally honestly think there will be a cure for ME?

    A cure? Along time. Treatments to ease the suffering potentially much closer. But it’s impossible to predict because it’s dependent on research funding. If ME were getting the funding of long covid And /or was being studied as part of the new massive interest - Possibly even 5 years for...
  20. Cinders66

    Germany: ME/CFS in Germany

    Sorry, I meant that they say estimates for the population are 240 000 which is about the same as those used in the UK. Yet the population of U.K. is 68 m and Germany 80 m. So I just wondered how it was being calculated. I’m sorry there’s an issue with diagnosis when it is so different in...
  21. Cinders66

    Article Science In The Age of Dogma: A Conversation with Dr. William Weir

    Yes of course they will and Its already thought that instead of Being A key gene there will be many sutble shifts (if we get any Positive leads) Which are only going to point to other potential research Afaiu, in the way that it has in Alzheimer’s or anorexia. It really really shouldn’t be...
  22. Cinders66

    Article Science In The Age of Dogma: A Conversation with Dr. William Weir

    Thank you this looks an interesting interview . This part was not elaborated much on and if I’m honest I’m not suprised as it represents a failure of British charity advocacy and campaigning (we don’t really have charities that campaign in the UK but instead negotiate and facilitate the...
  23. Cinders66

    Lorazepam stopped working partly

    Hi sympathies. are you reporting benefits from lorazepam as some do Clonazapam or activan? I can’t get Benzo prescribed but use the medication zopiclone and get similar boosts and likewise it’s the only way I function meaningfully. I have noticed gradual reduction in efficacy over years and am...
  24. Cinders66

    COVID-19 Long Haulers Act (& ME/CFS research $?) introduced

    I also think Its A gamble. Many assert we simply don’t know if they’re going to be the same underneath. I think it would be unwise to just sit back and say ah well the money is going in some vague post viral/ overlap direction,we can just leave ME. Unfortunately I think that the mindset seems...
  25. Cinders66

    Concrete demands for the Open Medicine Foundation

    I don’t think demands is the right word for a basically hugely praiseworthy , committed group like OMF. They are very open to many things (more than her in the UK) . i appreciate you wanting your voice heard. Others suggestions are good , you could also organise a large poll of pa on...
  26. Cinders66

    whole spine burning, do you have it?

    Yes on exertion or in flare. Surely indicates that the nerves there are impacted. Is this related to the dorsal root ganglionitis found in a few post mortejs of very severe cases in the UK? Who knows, there’s not been the research. I used to have to apply ice.
  27. Cinders66

    The PolyBio Research Initiative: New ME/CFS research from some of the brightest young minds!

    Oh I blame my electronics source! To revise my figures it is like the uk putting in £8 per year. I’d be very happy with that tbh. Still ten times what we are getting £800 000
  28. Cinders66

    The PolyBio Research Initiative: New ME/CFS research from some of the brightest young minds!

    That’s a great amount from Holland. when I first heard this news I hadn’t realised the population size is just just 6.6 m. & they are putting $3m per year. £2.2m. Is that correct? Adjusting for population size, I think that would be like The NIH putting in $144m per year Or the UK putting...
  29. Cinders66

    The new NICE Proposals for the Guidelines are up and SMC gives voice to the Deluded

    it does seem odd if the guidelines doesn’t acknowledge the services problem. Who best to discuss it than the commitee giving service use recommendations?
  30. Cinders66

    The new NICE Proposals for the Guidelines are up and SMC gives voice to the Deluded

    People are saying the research recommendactions are a problem, are the recommendations supposed to be general ones or ones specific to what the NICE committee would find helpful in their remit of writing management guideline?