• 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.

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  1. Alison2

    Rt Hon. Jeremy Corbin MP, leader of the Labour Party, to give opening speech at IiME 2018

    So about 24 hrs to go..... bump
  2. Alison2

    Rt Hon. Jeremy Corbin MP, leader of the Labour Party, to give opening speech at IiME 2018

    The card has 842 signatures. It would be great if we could get it to the 1000 mark . Anybody not signed yet? It is fine for those not in the UK to sign it.
  3. Alison2

    Wessely's next pie

  4. Alison2

    Letter to Holgate re MEGA

    cant get thingy to work,alert thingy:D
  5. Alison2

    Letter to Holgate re MEGA

    @Countrygirl if its possible to put just my first name, - mebbe followed by severely/very severely affected patient, yes put my name on it.
  6. Alison2

    Getting together

    Have to stop posting 4 while , getting dificultt. Hopfully I will be able to read / like . will thnk more about name
  7. Alison2

    Getting together

    Just seen a post by cindera66 on petition, opposing mega thread (bottom of page 63) "What we need is the birth of another support and advocacy/campaigning group ( telling that AFME/MEA rarely use those descriptors)" :cool:
  8. Alison2

    Getting together

    Thoughts about name Me support + advocacy - south west mesa or mesas Or me advocacy + support (sw) meas ? ?
  9. Alison2

    Getting together

    On outskirts of bristol
  10. Alison2

    Getting together

    Hi all im not sure how much I will be able to participate or contribute. Can have periods when not able to write /type anything , sometimes long periods. but glad to be a member.
  11. Alison2

    Doctor-recommended cure for ME

    monstrous elderly girls against 2muchbs - mega2 :D
  12. Alison2

    Doctor-recommended cure for ME

    I couldn't meet up - bedbound etc could I still be a member :eek:
  13. Alison2

    Doctor-recommended cure for ME

  14. Alison2

    Advocacy in the UK

    I know of several people with ME who wrote to jeremy corbyn (LP leader) about 6 mths ago and received supportive responses.also dianne abbot ( shadow health seceretary) may be more open , supportive? But any thoughts / action about this mebbe will have to wait til the end of sept
  15. Alison2

    UK news: MS sufferers' health damaged by benefits tests

    Confirmed! UN is investigating UK's 'grave violations' of disabled people's rights. http://www.disabilitynewsservice.com/confirmed-un-is-investigating-uks-grave-violations-of-disabled-people's rights/
  16. Alison2

    Three ways to mark today, Severe ME Day - #MEAction

  17. Alison2

    social services in the uk.

    Hi @Snowdrop having difficulty writing (and reading) just now , am going to have look later, when can. Thank you for letting me know about this.
  18. Alison2

    UK: advocacy/fundraising radio phone-in opportunity tomorrow (Weds 8th June)

    Just seen on twitter that he has nominated charlotte leslie , mp for bristol north west, and steve lefevre , radio bristol breakfast host , to a me chilli challenge stand off !
  19. Alison2

    UK: advocacy/fundraising radio phone-in opportunity tomorrow (Weds 8th June)

    Just tuned in real quick - just to see - cant cope with radio - they were still talking about me. they heve had a massive response. The guy said it has gone viral (whatever that means)but think it must be good!
  20. Alison2

    UK: advocacy/fundraising radio phone-in opportunity tomorrow (Weds 8th June)

    I managed to listen to some of it.it was very very good.well done naomi , speaking from her bed. highlighted severely affected. And the need for research etc
  21. Alison2

    social services in the uk.

    Thanks everyone.unsure about putting where I live- not sure why - but I live near Bristol.
  22. Alison2

    social services in the uk.

    Does anybody have recent experience of social services /care direct in the uk? I live alone, only family believes its psychological.I am really struggling.now tipped over or tipping over into very severe me.I am now at point or getting to it where will have no choice but to ask them for help.but...
  23. Alison2

    ME/CFS meeting at the Royal Society of Medicine - March 18th 2015

    There was a discussion about it, in general me/cfs news.take part in our severe me symposium from home. sorry dont know how to do link to it.
  24. Alison2

    ME/CFS meeting at the Royal Society of Medicine - March 18th 2015

    Sonya C. Hosted a symposium on the severely affected a while ago.it was pretty awful.I wouldnot want her to speak for me.,
  25. Alison2

    "...a despicable, pointless, all-encompassing waste" - HuffPost

    the poem by J eyre - in the comments . Is really good too
  26. Alison2

    Good GP in or near Forest of Dean, Glos (UK)

    Thirding (?) Wanting to know who this ME specialist is. @elphiemcdork I'm from Bristol too.
  27. Alison2

    Take part in our Severe M.E. Symposium from home

    How about someone in bed for starters. im having difficulty readinf/taking in /understanding sc 's comment..so much for understanding needs of severely / very severely affected
  28. Alison2

    Take part in our Severe M.E. Symposium from home

    I think we needed to and need to voice our opinions - as a severely affected sufferer i find it real scary and alarming that AFME [who don't have a very good track record ]appear to be wanting to start focusing on severe m.e
  29. Alison2

    Take part in our Severe M.E. Symposium from home

    Just sent an email to action for me about this.asking for them NOT to support any of the so called treatments (gbt /cbt etc) being giving to severely affected.this is my firsf post (and mebbe last :) ) am v severely affected.difficulty writing etc .taken it out of me. but wanted to do something .