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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. J

    Asthma diagnosis (poll)

    I was diagnosed with a mild form of asthma as a youngster and needed an inhaler from about age 6. It was only really troublesome if I got a cold since it always gave me a chest infection. (although the docs were never convinced it was asthma, but some sort of intermittent breathing problems). At...
  2. J

    can you touch your nose with your tongue?

    Hi Allyson sorry for taking a few days to reply. I only look on here periodically. I'm based in the UK, and I got the EDS 3 diagnosis from Prof. Mathias at the National hospital of neurology in London. I finally got my GP to refer me there as my autonomic symptoms were getting worse. In fact it...
  3. J

    can you touch your nose with your tongue?

    I can. None of my immediate family can thou. I was diagnosed with eds3 last october too.
  4. J

    How many sufferers are children?

    I cant see any statistics on this illness in terms of population groups being particularly accurate, especially in the UK, where persistant fatigue without an obvious explanation seems all that is necessary for a GP to say you have CFS/ME. People also seem to self diagnose it a lot as well...
  5. J

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

    Wonder if its worth starting a poll? To see how many of us have been also diagnosed with EDS, how many think they could have it (fit the criteria but no official diagnosis), and how many have been told they dont have it(been ruled about by a doctor who knows about it)? I dont think looking at...
  6. J

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

    Hi Allyson, ur right its not that hot the majority of the time in the UK. Maybe gets to around 30c in the summer at times. But as a former athlete I used to go to warmer climates for warm weather training camps twice a year. Extreme heat like 40c or over did not really bother me, actually...
  7. J

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

    Absolutely disgusted at this news. But can hardly say I'm that suprised, Wessely has worked his way into a powerful position. Lots of undeserving people have been giving such titles. History will judge him badly thou
  8. J

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

    Same with me too, i need to keep either well wrapped up in lots of layers or keep a hot water bottle on me most of the time. Even before i became ill, I didnt have very good tolerance for the cold, and loved the heat. On a boiling hot summer day where everyone else was hot and bothered, I...
  9. J

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

    Not sure how any of these findings fit with EDS or why? But I have EDS3 and mito dysfunction. When i got ill last year i did order the mitochondrial profile from dr myhill. Showed I had problems with mitos, blockages of gene expression and blockages with in/out of translocator proteins, raised...
  10. J

    Professor Simon Wessely says he is misunderstood

    Really beginning to realise how distorted the picture of ME is in many doctors minds, and probably down to Simon Wessely and his cronies. This happened the other day :- I got in touch with a mate over the phone, who I had not spoke to for a good couple of years. He had no idea I had been...
  11. J

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

    I think it could be a pre-disposing factor in many like myself. I also think its hugely under-diagnosed. I have been ill with ME for about the last 22 months on the moderate/bad scale. Primarily my probs are autonomic thou. Anyway i decided to seek out some other docs trying to get help, and...
  12. J

    FULL Autonomic Profile results back; ANY THOUGHTS FROM ANYONE?

    Thats actually very interesting Jenny, since ive also had the immunotherapy treatment for about 8 months now, with no beneficial effect whatsoever. Had been thinking of stopping it for some time. The whole process never made any sense to me whatsover with the end points etc. I never got a...
  13. J

    FULL Autonomic Profile results back; ANY THOUGHTS FROM ANYONE?

    Thought I would add my autonomic report to this too:- Particulars: A 33-year old male was referred for autonomic function test with a clinical impression of: Chronic fatigue Syndrome. Results Cardiovascular reflexes: Resting cardiac vagal tone (CVT): was 6.57 units in the linear vagal...
  14. J

    There's worse off than us

    I've read this Rod Liddle's column in the sunday times on and off for years, long before i became unwell. That's basically his thing, pick a topic (usually a hot one) that he knows little or nothing about, and verbally abuses. I've seen him aim his jibes at everyone from the police to...
  15. J

    ME/CFS: Into 2012 without Cure or Care

    On another note didn't Cher and Michael Crawford both have ME/CFS, maybe they could both champion our cause?
  16. J

    ME/CFS: Into 2012 without Cure or Care

    I bet they didn't use the lightning process!!! lol
  17. J

    Simon Wessely and "all in the mind"

    I think Wessely missed his calling, he could have been a politian based on how he avoids answering the question, and the way in which he mixes words.
  18. J

    Mitochondrial Function Profile (Acumen Laboratories, Biolab) via Dr. Myhill

    I agree Justy, and will post my results up here when I get a chance. The ATP profile seems very good at determining the level of fatigue (just how bad you are), and it doesnt seem possible to be a healthy person, and have a low score in this test, but I dont think fixing this is the real issue...
  19. J

    S. Wessely: "PACE trial, which tested interventions with an impeccable safety record"

    the sheer audacity of this guy is amazing. Just the outright lies he comes out with boggles the mind. I dont think there is a single person with cfs or me who would not be happy if his silly cbt and get worked. But it doesnt work, and wessely just cant comprehend that perhaps he is wrong. What...
  20. J

    What would YOU say?

    1. This illness is a life wrecker. 2. We are NOT just tired 3. See points 1 and 2 above
  21. J

    Comment by 'jonnyboy' in 'Horror Story'

    Well written Alex. When u put it like that its absolutely unbelievable that we still dont get adequate help. Quite how most doctors cannot tell the difference between someone who is genuinely severely ill, and someone who just thinks they are tired is beyond comprehension really.
    • jonnyboy
    • Blog entry comment
  22. J

    The Food Hospital (UK Channel 4 TV programme)

    I saw this programme, after a friend text me and told me it was on. It just made me very angry as I couldnt relate to the woman shown and her problems at all. What I'd give to be able to swim 3x a week. I just hope not too many of my friends saw it, and I assume I'm just like her.
  23. J

    stiff neck what helps?

    First of all you need to determine why you have a stiff neck. Is it cause by poor posture, and then hence its stiff because of either tense stiff muscles or it is poor joint alignment. If you think it to be caused by those, then definitely see a physiotherapist or an osteopath. Being a...
  24. J

    Can you have ME or CFS without cognitive dysfuction?

    Thanks for the replies. Taniaaust1 - what you said about having bad POTS, and as a result you dont get PEM. I think that aspect does apply to me, I've only managed to get PEM once, but apart from that I cant stay upright long enough to really do any activities to fully tire me out. If I'm on my...
  25. J

    'Yuppie Flu' wasn't such a bad name!

    Yuppie Flu would have been appropriate for me, both because of the type of onset I had, and also as I was a young professional. lol 'Total body failure' would seem a more apt name for the way I feel the majority of the time thou. Chronic fatigue is a total joke of a name, hell both my parents...
  26. J

    Can you have ME or CFS without cognitive dysfuction?

    Since I got unwell in Feb this year and consequently diagnosed with cfs/me around may/june. I've always been wondering if I've had the correct diagnosis. I do wonder if infact I dont have CFS, but just have a form of dysautonomia (mostly likely POTS). The reason I'm wondering is that one of...
  27. J

    the most effective (non-conventional) lab tests to do to get treatment?

    Just like to add an addition to my earlier comment on the mitochondrial profile tests. I found it useful in determing how severe you are, and for me it was great to get confirmation that something physical was wrong, as GPs had me doubting myself. On the other hand, I havent found that...
  28. J

    The Onset Poll

    I has acute onset, combined with flu like symptoms. But I'm convinced it wasnt viral in my case. In my case I think it was a perfect storm type scenario all occurring with the months of getting CFS:- too many hours working (80+ per week), some relationship problems, some finance problems, some...
  29. J

    the most effective (non-conventional) lab tests to do to get treatment?

    I'd also recommend the mitochondrial profile thru Dr Sarah Myhill, it gives a very good indication of where you are presently at in terms of severity. You don't have to be a patient of hers to get it done either. You can just ring up her office to get it arranged. Someone also put together this...
  30. J

    Has anyone tried Mickel Therapy or Reverse Therapy?

    I think the key here is patient selection. Clearly CFS is a waste basket diagnosis, and most people like myself are diagnosed largely by process of elimination. However I cannot for the life of me see, how a psychological treatment can cure some of the physical symptoms of CFS/ME like POTS or...