• 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. RuthT

    The ME/CFS Diary, New Smart Phone App

    Have used in the past, promoted me to rediscover. Have you thought about HR monitoring section eg average & max. Know many are keeping under individual level that leads to PEM? Know could be in comments & has facility to add extra symptoms, but wonder if might be useful prompt to explore?
  2. RuthT

    This helps me,,, but why -- [Cold showers/baths]

    Thank you J.G. Really thoughtful post, so googled general advice re dealing with lactic acid build up and found advice which echoes what I already have found to be helpful in easing symptoms: Hydrate Be consistent in activity (ie don’t push envelope) Increase activity very gently Back off &...
  3. RuthT

    Planning to see Dr William Weir, Harley St. Any advice or opinions?

    I saw him in the early 1990s - my GP pretty much referred me straight to Coppetts Wood, part of the Royal Free. He was helpful, caring & down to earth about what was & was not known & the research he was doing then. I wasn’t eligible. He did give me the best advice I could have had then -...
  4. RuthT

    $1,000,000 donation to OMF!!!!!

    Helpful article about Pine & bitcoin donations in The Guardian, before the OMF Donation was announced. https://www.google.co.uk/amp/s/amp.theguardian.com/technology/2017/dec/24/pineapple-fund-anonymous-bitcoin-millionaire-giving-away-86m-dollars
  5. RuthT

    What is your favorite probiotic

    I found some benefit from making kefir & drinking daily. Can tolerate milk. Is cheap & easy & homegrown. Also find Fage yoghurt helps. Am trying rotating probiotics & noting responses. Also found some help from BIMMUNO which is OTC prebiotic.
  6. RuthT

    David Tuller: My brief encounter with Prof Crawley

    Given truth & fair comment is a defence to libel or slander, I say publish/speak truth about questions of methodology & ethics & let her sue. Unlikely to go to court, as costs are huge & stakes high: tbh do think will not fare well if subject to scrutiny in court, as seen in the recent claim re...
  7. RuthT

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    *suggested* not digested a thunderclap - would definitely give indigestion! Thanks autocorrect...
  8. RuthT

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    I almost immediately emailed Bristol TEDX to say EC is not a disrupter, but the dominant figure in the field, and asked for an alternative speaker & suggested Jen. Suggest that during the talk we RT Jen’s TED talk & tweet about Unrest & the science we want, w the BristolTedx hashtag so this is...
  9. RuthT

    'UNREST' - UK Premiere at Sheffield Film Festival on Sunday 11 June

    Hi Joh. Yes, saw that and agree not keep quiet - am not doing that. Just trying to calibrate a confident positive response on social media to support Unrest. Surprised there aren’t more likes and messages of support on Twitter etc from ppl in response to the coverage, given impact of and...
  10. RuthT

    'UNREST' - UK Premiere at Sheffield Film Festival on Sunday 11 June

    Agree: once MPs signed up for that or shown an interest am sure are followed up. Wanting to support messaging on social media, but not be counterproductive by pushing too hard.
  11. RuthT

    'UNREST' - UK Premiere at Sheffield Film Festival on Sunday 11 June

    Understand the need for quiet working behind the scenes, while others can be more visible w support on social media etc. Hard but important balance to strike to ensure maximum impact for good.
  12. RuthT

    Top 3 Investigatory CFS/ME specialists in the UK?

    Wd be good to have contact details & referral route too. Thanks.
  13. RuthT

    Interview with Walter Koroshetz (NIH/NINDS Director) & Zaher Nahle (Solve ME/CFS Initiative)

    I had that, so downloaded Vimeo, and it played much better through the app.
  14. RuthT

    Rethinking childhood adversity in chronic fatigue syndrome

    The hermeneutical circle is very hard to escape & v few seem to be aware of the limitations this brings. Assumptions = conclusion. What about requiring work/research to disprove one’s own hypotheses: thought that was part was an essential part of the scientific/philosophic method.
  15. RuthT

    Research Check: can ‘Lightning Process’ coaching program help youths with chronic fatigue?

    Is see your point. I would characterise them as basing their work with vulnerable people uncritically on unsubstantiated & deeply flawed assertions.
  16. RuthT

    Research Check: can ‘Lightning Process’ coaching program help youths with chronic fatigue?

    Yes, but what are the mechanisms ‘in the head’ and where is the research/evidence to show the mechanism by which they can trigger/heal illnesses? ie any theory and evidence for causation. None offered either in theory or backed by evidence.
  17. RuthT

    Research Check: can ‘Lightning Process’ coaching program help youths with chronic fatigue?

    Funnily enough no-one asks for the mechanism by which these ‘treatments’ operate, not even the BPS mechanisms that are supposed to be addressed by them.
  18. RuthT

    Flu vaccine and ME/CFS - MEA info leaflet for 2017 - 2018 vaccine

    I’ve just had the flu jab: waited for a good day & had it in the morning as there is some research (heard on the radio, sorry no citation) suggested the immune response was stronger then (and I am generally better in the am than pm). Have had one each year since 1990s). The reasons why: I...
  19. RuthT

    This helps me,,, but why -- [Cold showers/baths]

    Hi Darran. Just watched the YouTube video of Prof Montoya talk at #CMRC17 hich is v interesting & helpful. Thought you might be interested in the diagnosis of other conditions misdiagnosed as MECFS, about 36 mins in.
  20. RuthT

    This helps me,,, but why -- [Cold showers/baths]

    Hi Darran. I’ve no idea why cold helps. I had whiplash following a car accident (on top of ME) and was in v bad pain. My Physio suggested cold showers, not amused as was v cold Jan), but gave it a go and really helped. She thought it helped calm the whole central nervous system down. Oddly...
  21. RuthT

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Thank you for responding, and so relieved that #mecfs17 wasn’t an issue. My heartfelt thanks for all you, Ron & others are doing & the way you are doing it. And for keeping on keeping on.
  22. RuthT

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Really thinking of you all. right now. So sad if #mecfs17 impacted the decision. That day gave me the first great hope for an enlightened approach to excellence in research. An insight into the work of the brightest & best researchers combined with compassion for patients and informed by...
  23. RuthT

    Sunblock factor 50 available in UK -anyone found one that works on very sensitive skin?

    Hi. After a friend with very pale skin used Riemanns 30+ with no burn or tanning except for a tiny bit of skin she missed, my husband has been using it and had no sunburn. I think they also do 50+. Is easy to apply & long lasting.
  24. RuthT

    Prickly feeling throughout body

    I had feeling earlier this year that my body was hot and ‘peppery’ as in black pepper: spicy, prickly. Hard to explain and was diffuse throughout my body. After a while I remembered I had felt like that some years ago (before recent re-triggering of MECFS) when I had low iron levels that only...
  25. RuthT

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Agree. When I have posted or tweeted I have been polite & factual.
  26. RuthT

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Thank you so much for going on and well done in a hostile environment. It certainly wasn’t like for like opportunity: either in time or in approach. I’m on their case re factual correction of claims of abuse. Don’t expect response, but making the point on #r4today twitter feed nevertheless.
  27. RuthT

    ME/CFS on LBC at 6pm tonight (20 Sep 2017)

    How very frustrating for you. Thank you for being on standby, and having to wind up for the possibility of an interview, and also cope with being let down early or late on the day. I do not underestimate how tiring that is. Thank you for all you are doing and saying on behalf of MEA and all.
  28. RuthT

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    I had already (yesterday) found an old article online asked the Readers’ Editor to remove/amend the misleading (2011) headline about death threats in the light of the 2016 FOI Tribunal ruling of lack of evidence of any such threats.
  29. RuthT

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Not likely to hear further, but have been petitioning BBC PM for fair coverage, also analysis of the science by Dr Adam Rutherford, Inside Science and/or Tim Harford, More or Less. Also asked them to apologise to Stephanie Flanders for ambush/set up interview.
  30. RuthT

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    I have checked the #r4today twitter feed and there is no abuse through the morning. I have asked @bbcradio4today to justify the framing of the whole interview in an abuse context without any justification beforehand as evidenced by lack of abusive response. This should have been known to Tom...