• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. P

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    yep he thinks I have pots so more tests are needed to confirm that and when ive relooked at pots it does all tie in with the symptoms
  2. P

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    thanks newearth and welcome to the forum if you feel your diagnosis is incorect stick to your guns im so glad i have hopefully now ill get proper treatment better medication and pain control and more respect from health professionals
  3. P

    Question your ME/CFS diagnosis any medical persons please read

    I am posting this thread as I have a new diagnosis the following post is from a post I posted in the private section of the forum but I really think non members need to be aware and any medical professionals who may be watching the forum . I knew I was misdiagnosed and I basically had to become...
  4. P

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    I have just been diagnosed with ehlers danlos syndrome I would advise anyone with an ME diagnosis who suspects thye have it to get tested suddenly my whole life from the moment I was born makes sense . It has taken me a lot of years of research looking at misdiagnosis to find a condition I...
  5. P

    UK: House of Lords to debate PACE study, Weds 6 Feb 2013

    You are very lucky Firestorm as there seems to be pretty much sod all available to the rest of us . Perhaps we all need to go on a pilgrimage down to cornwall although saying that I have a friend in cornwall who also has a ME diagnosis and she has been hitting her head against a brick wall...
  6. P

    Failing 'normal' lab tests now. Any ideas?

    Ever since I became ill I have had numerous abnormal results infact the ME clinic were not going to take me until as if by magic I had one entirely normal set of bloods the only entire normal set of bloods I have had since becoming ill and hey presto diagnosed with ME . It seems that there is...
  7. P

    UK: House of Lords to debate PACE study, Weds 6 Feb 2013

    yep me too and I don't care where tbh theres nothing great about great britain anymore unless you happen to be in the top 1% and if your in the sick/disabled/unemployed bracket your totally screwed . I know many over the last 5 years who have emigrated to places like new zealand and canada and...
  8. P

    discussion on a forum RE ME misdiagnosis

    This is an interesting discussion I have found especially as I believe I have an undiagnosed connective tissue disorder ....http://lupusuk.healthunlocked.com/questi...s?ref=home
  9. P

    Paper by white reviewed by wessely

    Im wondering what the next load of crap is that is heading our way as Alex says this is psychospin in action they know they are on a sinking ship and are willing to pull any old rabbit out of the hat in order to try and save their skins . I think there may be more papers like this to come . What...
  10. P

    Paper by white reviewed by wessely

    http://shortreports.rsmjournals.com/cont...type=HWCIT Views on the nature of chronic fatigue syndrome: content analysis Zahra Hossenbaccus1 and Peter D White2⇓ Abstract Objectives Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), has provoked much controversy and...
  11. P

    Wessely honoured with a knighthood for his work for GWS and ME

    So instead of taking it on the chin like anyone else would have he pulls the plug . He knew the odds of any affect on his knighthood were basically null and void anyway . What a joke so anyone who has been affected directly or indirectly by Wessely and his so called work cannot even have a voice...
  12. P

    Lady Mar writes to Prof Wessely

    I hope Lady Mar is pally with the queen and forwarns her of the huge mistake she is about to make
  13. P

    Wessely honoured with a knighthood for his work for GWS and ME

    No worries Roy I could see the point you were making hence my reply
  14. P

    Wessely honoured with a knighthood for his work for GWS and ME

    I don't think theres any fear of me developing stockholm syndrome Roy though from some of the posts on here latley about wessely I think some others may be suffering already ;)
  15. P

    Wessely honoured with a knighthood for his work for GWS and ME

    ive just got this through on my email I thought it was someone winding me up o_O saying that they also knighted jimmy saville and look what happened there . As far as I know a knighthood can be taken from a living person but not a dead one hence the row over jimmy saville but had all the stuff...
  16. P

    Professor Simon Wessely says he is misunderstood

    Sorry do you want me to post names addresses and personal details ? telephone numbers perhaps so you can verify what im saying is true ? I was merley posting of 2 cases that I know of seeing as folk dont seem to belive that such cases exist .. I worked in education myself and have had dealings...
  17. P

    ?underlying connective tissue disorder

    Oh I meet at least 5 on the beighton scale though several years ago this was totally ignored by rheumatologists in the UK . My feet have also gone flat this past twelve months and walking is becoming more and more difficult . Sometimes I feel like im being held together by tiny little strings...
  18. P

    ?underlying connective tissue disorder

    I am pretty sure I have an undiagnosed connective tissue disorder possibly a lesser known one but trying to get a diagnosis in the UK once you have been given a diagnosis of me/cfs is nigh on impossible . If anyone knows of any private doctors in the UK who specialise in connective tissue...
  19. P

    ME: bitterest row yet in a long saga

    blimey I thought id logged onto the wrong forum for the minute :eek: on reading some of the posts it was like id accidently stumbled across the Simon Wessely fan club :cautious:
  20. P

    Professor Simon Wessely says he is misunderstood

    personally I know of one family at this present time who are battling education, doctors and social workers with regards to their child , they are being bombarded with threats of legal action and have no idea where to turn . I also know of another family who were so desperate to get their...
  21. P

    Simon Wessely wins prize for "Standing Up For Science."

    hmmm contradictions and more contradictions . I thought he no longer worked in CFS or does he just say he does when it suits . Also slander and distortion of his work is a far cry from death threats isnt it yet when the going gets tuff and some research pops along that threatens his whole little...
  22. P

    The Deadly Impact of Government-Run Healthcare in the UK 10/20/12 by Dan Mitchell

    Doctors should be checked even folk stacking shelves in the supermarket have appraisals now infact very few jobs dont . Over the years ive seen some very good nhs docs and some very bad ones im not just talking myself here but through my kids and other people ive had to take for medical care...
  23. P

    Cross Party Group on ME

    I havent read all the thread its far too much for me to wade through . I have to say my experience of getting diagnosed with me/cfs has not been a positive one . ive had abnormalities since becoming ill . I went around the NHS merry go round for 3 years untill I was finally carted off to one...
  24. P

    Lipkin bad news folks

    yeah I can't say im happy about this either .There are still too many issues that havent been addressed properly and since when has asking valid questions about a scientific study been wrong ? This could only happen in the world of me/cfs . Where would Aids / HIV patients been today if they...
  25. P

    Lipkin bad news folks

    The article seemed to point to Frank I had also heard this on the grapevine long before this article ever appeared .
  26. P

    Mikovits radio interview Oct 7: XMRV, WPI, accusation of theft etc

    There are posts elsewhere on the internet about this I think its a bit off if youve had your knuckles rapped for posting it here
  27. P

    CFSAC meeting Oct 3-4, 2012

    problem solved ;)
  28. P

    CFSAC meeting Oct 3-4, 2012

    hmm I now have music and still a blue screen ? :(
  29. P

    CFSAC meeting Oct 3-4, 2012

    I cant get this to play I just get a blue screen ive never had a problem before can anyone help im using chrome
  30. P

    Possible cause found? Alpha or Beta Radiation.

    Sorry but I think the title of this thread is a bit much especially when many are still reeling over what has happened over the last 3 years . I have to say im rather sceptical about such bold outlandish claims even xmrv was not claimed to be the cause it was seen as a potential cause. wouldnt...