• 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.

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  1. suseq

    ME on BBC news this morning

    Just watched this via iplayer/channels/BBC1/schedule/today/news - need to fast forward to 233.48 on time clock. It’s the final item. The PR and awareness being generated by Unrest is just brilliant and so impressive. Both Jen & Dr Shepherd managed to say a lot in a very short space of time...
  2. suseq

    If your doctor is clueless, direct them to the BMJ's Best Practice Summary for ME

    Thank you for highlighting this. Luckily I have a very supportive GP. However, knowing that the BMJ is acknowledging reality of ME (despite the still muddled conflation with CFS which many reduce to CF) is a helpful revelation and step forward. Now need to transform this acknowledgement into...
  3. suseq

    UK, Weds 18 Oct: Jen Brea & Omar on ITV news and in The Times with Unrest

    Thank you for highlighting this and posting clip and article as managed to miss both. Agree totally with @FTY regarding Jen & Omar's incredible PR and advocacy; and massive appreciation to the ITV news team and Alistair Stewart (the newscaster) for featuring such a great interview on the main...
  4. suseq

    Very Sad

    Agree @Daisymay. I am so sad, disappointed and bewildered that such an incredible resource of viable information, advocacy and support is seemingly imploding at a time when so many positive efforts and outcomes are happening. Trust, integrity and safe security has to be fundamental in any...
  5. suseq

    Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

    Agree with so many of the valid points already made. Given PACE was/is effectively a political tool and the DMail is a populist right leaning paper this piece is a huge step forward. A whole page highlighting the contentious 'debate' surrounding ME is an achievement. Hopefully positive...
  6. suseq

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Too true! Another gathering of great minds working collaboratively on our behalf that inspires so much hope and positivity. A much needed contrast to all the negativity surrounding this illness; especially from this side of the pond. To all involved : Your belief and faith in our lived...
  7. suseq

    UK NICE guideline consultation open 10 July 2017 until Friday, 21 July 2017.

    Great letter; brilliant advocacy. Well done to all involved.
  8. suseq

    Science Media Centre expert reaction to Journal of Health Psychology’s Special Issue on The PACE Tri

    The 'expert' responses provided by the SMC seem purposely disingenuous and provocative; possibly in the hope that they will provoke responses that validate the scurrilous and negative view they unethically continue to present of those who advocate for, or suffer with, this illness. All...
  9. suseq

    Bad news to the MEA from NICE: no review considered necessary

    To be honest I don't have a clue as social media and all things Twitter are a bit of a mystery to me. You could try taking a look at the Healthwatch website: http://www.healthwatch.co.uk/ for more info, but it could be just another quango type set up along the lines of the SMC that's...
  10. suseq

    Bad news to the MEA from NICE: no review considered necessary

    I am struggling to keep up with everything on PR at present, not least because of the debilitating impact of trying to read/think/write coherently about subjects which are deeply concerning and highly emotive. There is an immense sense of frustration that we, the ME patient community, are...
  11. suseq

    UK - petition to hold a debate in parliament for CFS/ME treatment.

    Received this morning via email this response which is sent automatically to all who signed this petition – “Debate in Parliament the absence of an effective policy for the treatment of M.E”. Needless to say it's a disappointment and mess of conflicting and discredited guidance, though there...
  12. suseq

    BBC interview with Ron Davis

    Dear @Janet Dafoe (Rose49) It is really sad and disappointing that something that seemed so positive turned into such a negative experience. Ashley's words are profound. We all come to know a sense of fear and concern with this illness in relation to how we are perceived and treated, and how we...
  13. suseq

    History, influence & implications of the IiME conference

    So well said @Jo Best - if there was any integrity or credibility within the BPS model or the SMC, the work and achievements of Invest in ME, and all the brilliant scientists and researchers attending the conference would be recognised, publicised and fully funded. That they are not proves the...
  14. suseq

    NY Health Commissioner sent letter to every physician in the state about myalgic encephalomyelitis

    Wow was my first thought too! Hope this enlightened awareness spreads. With thanks to all involved.
  15. suseq

    HANSON, FLUGE AND MELLA JOIN OMF SAB!!!

    This piece written by Laurie McGinley for The Washington Post, which has just popped up on my news feed, is inspirational, and the kind of revolution in medical thinking and research I think and hope may happen as a result of this OMF collaboration and it's policy of sharing open data. It's...
  16. suseq

    HANSON, FLUGE AND MELLA JOIN OMF SAB!!!

    Agree with many comments already made. This is really good news. I have real hope and faith that the collaboration between this incredible OMF team led by Dr Davis will find the answers to the what & why of our illness and others beside. And likely they are going to fundamentally revolutionise...
  17. suseq

    Esther Crawley - 18th May 2017 - A day with the MUPP(ets) and more

    So a 'good' acronym is one that makes a word that provides an insider joke on the days events! And they wonder why we are appalled by how patients and these illnesses are being grossly misrepresented and maligned.
  18. suseq

    Esther Crawley - 18th May 2017 - A day with the MUPP(ets) and more

    Agree - this is the disingenuous view that is being relayed - and the concerning wider agenda is to psychologise the treatment of illness in general so that welfare and insurance benefits can effectively be limited or denied. What needs to be made clear is that 'medically unexplained' and any...
  19. suseq

    Esther Crawley - 18th May 2017 - A day with the MUPP(ets) and more

    Never ceases to amaze how such highly educated people can be so stupid and lack basic common sense.
  20. suseq

    Crawley: How to deal with anti-science BRS2017

    Apologies @Daisymay - I should have tagged you at the beginning of my post given it was your post (#519) that inspired me to write it!
  21. suseq

    Trial By Error, Continued: CMRC to Virology Blog: “F**k Off!”

    As suspected at the time, it would seem these clauses are designed to protect members from scrutiny, and effectively tie the hands of any member or charity who may wish to raise concerns on behalf of the patient community. It was questionable when the charter was made public, and still is...
  22. suseq

    Edinburgh News: Gerry Farrell: Why are you ignoring ME, Ms Robison?

    Brilliant advocacy. Thank you.
  23. suseq

    The Scotsman: Kevan Christie: Stereotyping still prevents ME from being taken seriously

    A superbly incisive piece. Thank you.
  24. suseq

    Crawley: How to deal with anti-science BRS2017

    I am hugely grateful for the brilliant thought provoking research writings and advocacy of Margaret Williams, Professor Malcolm Hooper, Eileen Marshall and Suzy Chapman, as well of those of the late, and sadly missed, Jodi Bassett on her www.hfme.org website, plus all the other wonderful...
  25. suseq

    An Acceptance and Commitment Therapy (ACT) intervention for Chronic Fatigue Syndrome (CFS)

    Acceptance and Commitment to what? Someone else's viewpoint? What constantly concerns me is that the questions posed in assessment for these therapy studies are normal subjective reactions - they are not necessarily responses someone who is ill would give. It is normal to notice your...
  26. suseq

    Any suggestions for a placard for #MillionsMissing in London 12 May

    Just a few ideas: Don't Misrepresent ME CBT/GET Misrepresent ME I'm here because #Millions Missing can't be We need Bio Research not Psychotherapy Help us to help #Millions Missing due to ME #Millions Missing due to ignorance of ME We need you to help #Millions Missing If you don't understand...
  27. suseq

    Crawley: How to deal with anti-science BRS2017

    This is evidence of the contempt and outrageous psychological projection and manipulation *being used to undermine a severe chronic illness and justified concerns. Surely no-one with any integrity, medical or otherwise, can support such injustice and harm to patients welfare. With thanks to...
  28. suseq

    Extremely Uncomfortable Swollen Abdomen

    Thanks Helen. My free T3 has been tested several times and most recently by my GP, when it showed low side of normal if I remember correctly. Unfortunately don't have figs to hand and in my experience Endo's dismiss T3 if TSH & T4 levels considered within range. However, plan/hope to see GP this...
  29. suseq

    MUS or DEN? Letter in British Journal of General Practice. Good one.

    @Sean love your translation which is The Truth!
  30. suseq

    MUS or DEN? Letter in British Journal of General Practice. Good one.

    On p.5 of the MUS guidance document @lilpink links to, under the subheading 'How will this guide help you?' It states: This guide has been written by a group of highly experienced MUS service experts (see page 18 for list of members involved). Evidence-based practice has been summarised where...