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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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Search results

  1. S

    head pressure heart palpitation

    the main issue for me is that the tightness prevents sleep does anyone know why my gp says it's head muscles going into spasm but that wouldn't prevent sleep? maybe veins in the brain have tightened? any response appreciated
  2. S

    head pressure heart palpitation

    does anyone lnow what the best brain scan is? researchers like dr Byron hyde etc use them but I know some pwme and nothing is found?
  3. S

    head pressure heart palpitation

    worse thing is it stops me s leeping even with sleeping pills ,i was thinking of trying nimodipine. to improve blood flow . anyone tried it?
  4. S

    head pressure heart palpitation

    hello can anyone shed any liht on the following: i get bad heasrt paplitions esp. after straining ringing in ears is constant and pressure/tightness in head sometimes lying on a pillow is like having my head against a block of wood and itmakes sleeping worse thanks
  5. S

    OXYGEN MACHINE

    Does anyone know of any oxygen machines/products that might be used to increase oxygen/blood flow to the brain? does it make a difference to sleep? thanks in advance
  6. S

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

    d0es anyone knowif he prescribes sleep meds eg. zoplicone etc?
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    UK SLEEP DOCTOR NEEDED TO PRESCRIBE MEDS

    HELLO, DOES anyone know of a doctor who'll be willing to prescribe sleep meds eg. temazepan or Z class drugs on a longer basis? my Gp will only prescibe a few. I'm suffering with really bad insomnia just can't sleep. Preferably but not exclusively in the Midlands . thanls in advance for...
  8. S

    Vaccination HPV

    heard a v. interesting doc' on vaccines- some people are damaged by them but we don' why- the science isn't there yet (is anyone investigating???) here it is if interested: http://www.bbc.co.uk/programmes/b06z2pn8
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    Great resource of information including old medical papers about ME

    check out thjis child abuse notice from Crawley http://www.nature.com/naturejobs/science/jobs/568875-research-associate-trial-manager
  10. S

    Great resource of information including old medical papers about ME

    \just heard 'Dr' Crawley on Woman's Hour- she said girls are more likely to get ME probably because they're more likely to get depresson. If you get 'treatment' you're likelihood of recovery is 'high'. Why can't the BBC stop putting Crawley and her ilk on or at least get the other side. very...
  11. S

    Action For ME appoints new medical advisors

    I've just seen this from AFME In October 2015, we appointed Prof Julia Newton and Dr Gregor Purdie to the shared role of our Medical Adviser. They took over from Dr Alastair Miller, who had been Action for M.E.’s Medical Adviser since 2010. I thought this is interesting because Dr A. Miller...
  12. S

    Holgate - 'Encouraging new ideas for ME/CFS research'

    so there's an insider who's 'snitching' to the outside world- who on earth could that be??
  13. S

    Holgate - 'Encouraging new ideas for ME/CFS research'

    That's interesting Esther and intriguing- i know nothing of this but i'm too ill to be fully cognizant of all that's going on, being low end of moderate.(Actually i shoudn't really be on here now- that'll be another night of not getting to sleep till 2.30 am!) I don't know maybe i just need to...
  14. S

    pathologising normality? BBC radio prog on new DSM

    I heard that progrmme too - it strikes at the heart of the issue of what is meant by a 'mental disorder' and what is normal dysfunctional human behaviour? I agree with the title of this thread, it does seen to be ever increasingly pathologising human behavioiur. you Just have to listen to...
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    Holgate - 'Encouraging new ideas for ME/CFS research'

    Actually i don't fully get what they do because they don't actually fund research, just sort of get people together. But those groups do what they do outside of the group anyway. who knows what will come of it.
  16. S

    Holgate - 'Encouraging new ideas for ME/CFS research'

    Who's in this collaborative: we have the good guys as well as the not so. We have ME RUK in that group. We also have charles Shepherd. at previous meetings they've had Dr Newton. prof Lipkin speak etc. These proper researchers are hardly doing 'okay' researcj- MERUK is one of if not the oldest...
  17. S

    Holgate - 'Encouraging new ideas for ME/CFS research'

    what i meant was that in this collaborative there'll be good biomedical research undertaken but there'll also be psycho bs as holgate wants to keep everyone happy. Not ideal at all but it's about time our governement put some money into this disease.Then when the good research comes through...
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    Holgate - 'Encouraging new ideas for ME/CFS research'

    Im think that the bottom line with this collaborative is that there'll be some proper research and some psychio research. Not ideal but ive been ill so long with this now that i feel that something is better than the nothing we've had for decades. I think we just need to take this on board in...
  19. S

    UK: Norfolk & Suffolk NHS ME/CFS center goes biomedical!!!

    might be risky to shout about it- the likes of 'Dr' Miller who chairs BACME would get in there and voice total opposition. he firmly believes nothing should be offered but CBT GET. maybe best to keep under the radar in that respect?
  20. S

    UK: Norfolk & Suffolk NHS ME/CFS center goes biomedical!!!

    But aren't these clinics bound by the NICE guidelines? If the likes of Dr A Miller get wind of this he could cause trouble- he has said they should offer nothing but CBT & GET/
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    UK Research Collaborative Conference in Newcastle: 13th - 14th October

    But there seems to be a divide within psychiatry as to what it means or there are fudge areas- eg. dementia is regarded as a psychiatric issue. Hornig still calls herself one but to her it means any disease involving the brain unlike the \wesseley types who are behavourists.
  22. S

    HAS ANYONE ONE SEEN /Chronic Fatigue Syndrome: Not Just Tired All The Time! - Dr Alistair Miller ON

    The problem with Miller is that he advocates/GET CBT and says nothing else should be tried. He is an arch 'fudger'- the sort we have in the UK who say it's an organic disease then support millions (the only research money) on cbt rather than actual research- woiuld that be acceptable for...
  23. S

    HAS ANYONE ONE SEEN /Chronic Fatigue Syndrome: Not Just Tired All The Time! - Dr Alistair Miller ON

    oN YOU TUBE the bit where he talks about the notion that me is purely physical is an 'extreme' and harms patients' is v v annoying. He presents himself as 'so reasonable' - makes me FUME .
  24. S

    UK Petition to publish death stats after benefits stopped

    this is only going to get worse as IDS has recently spoken of getting those in wrag group back to work. And most people couldn't care less.
  25. S

    Get a Ringside Seat for Invest in ME’s 10th International Conference on 29 May

    no problem Bob- i just emailed them (Iime) and i imagine they'd know because they deal with these questions a lot
  26. S

    Get a Ringside Seat for Invest in ME’s 10th International Conference on 29 May

    hi kati, i emailed Iime about this and got the following so you SHOULD be able to watch: One does not need a different disc format for US computers or modern flat screen TVs. Our DVD producer replied to a similar question as below: Regional coding can affect play playback on PC's but not the...
  27. S

    Get a Ringside Seat for Invest in ME’s 10th International Conference on 29 May

    Did anyone think the Betsy keller one inappropriate- im moderately affected but couldnt do those exercises. Most are struggling just to keep fed and clean. The people she must see must be v. high ly funtioning. But she didnt seemn aware of this- just extrapolated to everyone with ME. I wouldnt...
  28. S

    NIH 5 years strategic plan webinar with dr Lipkin

    i dont't know really. i was thinking of putting an ad in my local me newsletter again if it was a 'something' that's being done; maybe a post on PR? I just saw Dr Hornig's presentation on the IIME DVD and she said they only have enough money to collect sample, no analysis. V. sad. I'm no expert!
  29. S

    NIH 5 years strategic plan webinar with dr Lipkin

    maybe we cou.ld advertise that in the usual way?
  30. S

    NIH 5 years strategic plan webinar with dr Lipkin

    Thanks for the info scarecrow. Im so frustrated at the thought that if we got more PWME aware and they donated, we could get a few projects funded.. But how??????? Is it possible to watch the lipkin seminar?