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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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  1. S

    DLA - how can I be so ill and yet have normal results??

    Thanks Esther - The more I think about it the more averse to the idea of benefits I am - I've managed to be freelance for 5 years and just about stay afloat. I've NEVER been or wanted to be part of the system. The consideration for applying is to take a bit of the stress of cashflow away so I...
  2. S

    DLA - how can I be so ill and yet have normal results??

    Hi all - I've been considering looking into applying for DLA. I've been ill for about five years, and am a self employed designer working from home. I vary from being able to work 4-5 hours (albeit lying on the sofa!) a day to just 1 hour a day, and recently I've been too unwell to be able to...
  3. S

    What should I be asking the Doctor?

    Hi both - Thanks so much for your replies - I was worried my question was a bit rambling! Yes, I've joined the Benefits and Work site, and downloaded their guides. It looks really helpful - it's frustrating that in order to get help that you desperately need you have to learn to 'play' the...
  4. S

    What should I be asking the Doctor?

    I hope you don't mind me asking this rather random question here - I haven't the brain power to go through all the info on here about treatment protocols and diagnostic tests, and I don't have a huge amount of knowledge of all the technical medical stuff you discuss on here - I'm learning...
  5. S

    Visual discrepancies/ sensory gating?

    I have a similar strange sense of detachedness and unreality, particularly in supermarkets or parties, where there is a lot of sensory stuff to take in. I find myself having conversations with people, but feeling as though I'm separate from the scene, watching myself talking, like there's a...
  6. S

    Anyone else with neuro stuff like burning pain and tingling?

    Ohhhhh yes, lots and lots. As far as I'm concerned, ME is without doubt a neurological condition, at least on some level. Autonomic dysfunction clearly forms the basis of my condition, and it was explored by three different neurologists when I first got ill because it was so obviously central...
  7. S

    Article: A Hitch in its Step: PACE Trial Indicates CBT/GET No Cure For CFS, 60% of Patients Show No

    Well done Cort, that's a great article. I agree we should be discrediting it with positivity - unfortunately angry letters often fall on deaf ears. We need to find a good journalist here in the UK who is prepared to do some intelligent investigative work on our behalf and spill the beans.
  8. S

    New article in CBC - Exercise Helps!!

    Definitely. We need the backing of PR and marketing people who have access to the right media.
  9. S

    New article in CBC - Exercise Helps!!

    This is just unbelievable.
  10. S

    ITV coverage of PACE trial results

    Me too. I just saw the info next to the video and decided I am already ill enough without being subjected to that!
  11. S

    PACE Trial and PACE Trial Protocol

    How bloody depressing. Not only have we got to live with the day to day struggle of living a life like swimming through treacle, but now we have to fight all over again to explain to people who have watched the telly today that this is a chronic, debilitating, neuro-endo-immune condition and not...
  12. S

    It's all in the NAME

    It is so frustrating to have a condition which has so much stigma surrounding it. I have just read the article on Esther Rantzen's daughter's 'coeliac disease', and Esther is still referring to it as 'the cause for Emily's M.E.". If she has coeliac disease, that's not ME! I'm frustrated by...
  13. S

    ME/CFS: Sleepers vs. Insomniacs, Why the differences?

    My sleeping pattern seems to vary depending on my physical condition. When I'm tired but wired I have dreadful insomnia, not being able to get to sleep till 4 or 5am, and then if I'm woken up I can't get back to sleep again despite being exhausted. Then I will have periods of being a sleeper -...
  14. S

    Michael Crawford "fought off ME"

    Hi Nielk, you didn't come across as though you were belittling the stress, don't worry! I was just responding in general to the article and the idea that having money somehow helps people 'recover'. Yes, it's hard work having to deal with the financial impact of the illness, both for people who...
  15. S

    Michael Crawford "fought off ME"

    I don't expect having money helps really in any way with treatment, but to be able to totally relax and not have to think about paying the bills must take away one of the main stress factors that most of us have to live with on a daily basis. I think this article is a bit of a double edged...
  16. S

    ME / CFS and cervical smear tests

    That's interesting - I hadn't heard that XMRV shows up in cervical cells. I wonder how many doctors find abnormal cells which aren't cancerous and go on to discount them because it's not cancer - it could be a clue pointing towards some cellular issue with ME patients.
  17. S

    ME / CFS and cervical smear tests

    By the way, I haven't been tested for XMRV so I don't know if it's present, but I have 'classic' neurological ME.
  18. S

    ME / CFS and cervical smear tests

    Thanks all. I'm not sure about the method actually for the last one. I had three recalls and I vaguely remember that the doctor said they'd done something different on the last one which was more accurate... trouble is, my lack of brain means I can't remember! I must be due for another soon...
  19. S

    ME / CFS and cervical smear tests

    Thanks UKXMRV - sorry to hear you've been through all that. They're nasty things anyway! Thankfully mine have never been to the point of biopsy, they always take about three or four smear tests before concluding that it's healthy. Just every single time I have one, it comes back inconclusive...
  20. S

    ME / CFS and cervical smear tests

    Apologies if I haven't posted this in the right section, I wasn't sure where to put it. Has anyone else had problems with cervical smear tests? Every time I have a smear test I invariably have to go back again more than once for repeat tests because they come back 'inconclusive'. I...
  21. S

    Ability to work ATOS medical test: Jjudge for yourself (Daily Express, 27 Jan 2011)

    I have frequently laid here wondering if I'm able to get any kind of help with benefits, particularly as I'm freelance and I can't afford to be totally out of action for weeks at a time. Those periods cause additional stress which then makes me worse, and so it goes on. But every time I consider...
  22. S

    Article: Transcription of Judy Mikovits Prohealth Lecture: Parts VI and VII: Q & A

    Brilliant, thanks for the hard work transcribing this. Makes a lot more clear for me, as someone who's just beginning to learn about the XMRV connection.
  23. S

    Myra McClure States She's Withdrawn From NIH SEP Panel !

    Amazing news!
  24. S

    work advice

    This is an interesting one - whether to tell an employer about your condition or not. I am self employed, and I decided it shouldn't matter as long as I am able to complete the job in good time and in a quality I am happy with. I have been diagnosed with ME for nearly three years, and I haven't...
  25. S

    PatientsLikeMe doing a CFS/FMS survey for Petrie (major psychobabbler)

    Really shocking - it's all so blas and basic. A simpleton could have come up with those tests, and there's nothing conclusive there! I don't understand the catastrophic thinking thing - if only some of the CFS sufferers displayed catastrophic thoughts (which is understandable given some...
  26. S

    What is this horrible metallic taste??

    Hi Juniemarie - I get that metallic taste when I'm going downhill. Not on any meds although I used to be on B12 injections monthly, but it makes no difference. I don't have it all the time, just when I'm particularly run down, and it's usually accompanied by 'fizzing' neurological sensations in...
  27. S

    Do you have scoliosis, double jointed, MVPS?Odd overlap- Connective Tissue Disorders?

    This is fascinating for me - I have had connective tissue trouble for years before I got really ill and was diagnosed with ME. I was born with talipes (club foot), a shortening and tightening of the achilles tendons. When I was little I used to have to do exercises to address my flat feet...
  28. S

    Constant nerve tingling ,hands legs ,head..

    My initial symptoms when I was first admitted to hospital with a suspected brain tumour were very much central nervous system, all down my right side. I could practically draw a line down the middle of my body and feel the difference between the two sides. My face was fizzing and aching and...
  29. S

    Is standing tiring but not dizzy when you stand up? Get tested for treatable OI!

    I am wondering if someone might be able to help me pinpoint this symptom, as I am not sure if it is ME / CFS, OI or another issue, or a bit of all three! When standing or sitting for any length of time I start to get a very intense pain in my back, which, if I stay upright, spreads through my...
  30. S

    The See Saw known as CFS...do you have this?

    I know exactly what you mean Spitfire, I also have this but my days tend to come in clusters of four or five OK and then four or five bad. I've found that my general condition seems to improve and go downhill pretty drastically over the months, with the day-to-day thing continuing all the time...