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  1. Binkie4

    Michael Sharpe skewered by @JohntheJack on Twitter

    @Amw66said Is this Sharpe's motive for engaging in this way? Keep us occupied while we think we are moving forward. In the meantime, their real work goes on behind the scenes.
  2. Binkie4

    A song for ME: Blowin' in the wind

    Thank you @Robert 1973 and all the singers. It worked beautifully. A few tears as I "sat with " it today, joining in actually. Really takes you into where the losses of this illness hurt. Good Luck to @dave30th in pulling down every last shred of the BPS nonsense.
  3. Binkie4

    David Tuller's new crowdfunding campaign (April 1, 2018)

    Second donation Thank you so much to the anonymous donor, and Erica Verillo's matching donation.
  4. Binkie4

    Video: "After Unrest"

    Sorry- Pacing with a heart rate monitor Facebook group. It's a very good site, informative files and knowledgeable participants. I am presuming that the Ketra Wooding named on the Jen Brea tweet above is the Ketra Wooding on that site. Adrienne Wooding lives in Australia and I think Ketra does...
  5. Binkie4

    Video: "After Unrest"

    I think Ketra Wooding is active on the HRM site, alongside her mother Adrienne. I thought they were both severe but presumably Ketra has improved. EDIT: I just started watching the video. Ketra is actually severely ill and lives in a nursing home.
  6. Binkie4

    Michael Sharpe skewered by @JohntheJack on Twitter

    Why is MS engaging in this Twitter stuff at all? What has he to gain or lose? It gives us insight into his thinking which damages him. I am amazed that he finds it of interest at all.
  7. Binkie4

    Epstein-Barr virus protein can “switch on” risk genes for autoimmune diseases

    @janice Thank you for posting. From your knowledge does this help identify the group who might respond to antivirals?
  8. Binkie4

    Updates from the UK ME/CFS Biobank / CureME team

    There was a short piece earlier in the week about the BBC filming at Merryn's family home (sorry but I have forgotten her surname) for a programme on severe ME to be screened in May in ME awareness week. Are there two programmes on ME to be going out soon? @Russell Fleming
  9. Binkie4

    Travelling tips anyone? (car)

    @Mattie So sorry. I am exactly the same. Cannot find anything to help. We do a 7 hour journey once a year. We stop overnight halfway. This year we are going for 3 weeks so that I can get some time without pem. Diagnosed 10 years and this problem is getting worse. All our family live at a...
  10. Binkie4

    Michael Sharpe skewered by @JohntheJack on Twitter

    Absolutely agree. Does he think patients like to spend days in bed? The trouble is....I think he does. We are .....well I'm speechless. How can he think that? These tweets are proving very illuminating.
  11. Binkie4

    Dr Myhill’s complaint to GMC about PACE authors.

    @NelliePledge, or anyone Do you know what is happening with Dr Myhill and the petition and letters? The initial closing date was 25/3, I think. We are 3 weeks on so do we know if there has been any response from the GMC?
  12. Binkie4

    Lancet is calling for GMC resignations

    From what I have read and heard, junior and not so junior doctors feel very strongly about this case. I think they have or are proposing to crowdfund to pay legal fees for Dr BG. I think she was a paediatrician covering A and E as well as a paediatric ward and on her first shift, alone and...
  13. Binkie4

    New York State: Department of Health info page

    I think in about May 2017 the Commissioner in charge of NY State primary care physicians sent a letter to all PCPs removing CBT and GET as treatments for ME/cfs. I gave my own GP here in UK a copy. It was in a letter dealing with another subject, a child health issue...
  14. Binkie4

    Michael Sharpe skewered by @JohntheJack on Twitter

    I don't understand why Michael Sharpe keeps going. He has been pulverised ( metaphorically in case of confusion) but still keeps arguing as if there is an argument to be had or won. When will he realise it is over?
  15. Binkie4

    Devastating ME leaves teen girl "unable to leave the house"

    I think this is the second article that the Liverpool Echo has focussed on recently, both sympathetically written. Can @ladycatlover confirm this?
  16. Binkie4

    Cimetidine: An immune modulator that actually seems to be working for me

    @Jonathan Edwards In an ideal absolutely scenario, one might hope that the correct treatment for one condition might help ME. @Woolie is doing well with her treatment. Maybe there are other areas where this could happen?
  17. Binkie4

    Cimetidine: An immune modulator that actually seems to be working for me

    Please be assured that I would not attempt to change my drug or dose without medical input. I am doing very well with omeprazole as prescribed. The poster on the other site was taking much lower doses than @Woolie but it seems there were several problems with medication overall. Just...
  18. Binkie4

    Cimetidine: An immune modulator that actually seems to be working for me

    @Woolie I read it all yesterday but have forgotten a lot. I took from it that she had a diagnosis of CFIDS and found the cimetidine helpful, such that she was sufficiently improved to plan to return to work etc. She did have a range of symptoms and was also taking antivirals etc. In the end the...
  19. Binkie4

    Cimetidine: An immune modulator that actually seems to be working for me

    @Woolie I hope you continue to do well on the cimetidine. When I posted above I had forgotten that the thread started with your benefits from the drug: I would have phrased it differently if I'd remembered. Am very foggy as is obvious but I do think reading the end of above link is necessary...
  20. Binkie4

    Cimetidine: An immune modulator that actually seems to be working for me

    http://forums.phoenixrising.me/index.php?threads/tagamet-cimetidine-for-cfids-worked-for-me.1512/page-4 @Hutan posted the above very detailed thread most of which I have now read. The poster had an initial very positive response to cimetidine BUT please read to the end. Not quite what it seemed...
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