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

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  1. helsbells

    Petition: Opposing MEGA

    Not sure if left already but a piece about FITNET with the opportunity to comment on a Bristol Uni student piece: http://epigram.org.uk/lead-article/2016/11/backlash-landmark-university-research-trials
  2. helsbells

    Medical harms poll (Potential for class action law suit regarding CBT/GET)

    Not me, only the usual awful experiences of being told I was hysterical and now being phobic of hospitals which probably accounts for a huge amount of us in the UK who've been ill decades. I just wanted to lend support for the idea, I've always thought this if possible, would be be an ideal...
  3. helsbells

    LED red intranasal light therapy

    I have ME amongst other things but my most pressing problem is chemical sensitivity and most immediately of all a dust allergy that triggers Trigeminal nerve pain in my eye from even minute exposures. I have been reading about phototherapy specifically in relation to this as I am desperate - I...
  4. helsbells

    "new enhanced Perrin technique" in Dublin

    It didn't help me at all.
  5. helsbells

    Reiki Healing. Anyone have any experiences?

    Sorry did nothing for me neither did "body talk"
  6. helsbells

    Going Off Clonazepam

    Hi everyone will have to keep brief in no way related to the topic but am having a weird reaction to cortef (I think?) and need to lie down. I swim against the general tide on this one - i experience marked and protracted side effects whenever I even try to cut down a small amount this is as...
  7. helsbells

    frequent urination leading to OI/POTS/NMH?

    I too have had IC for years, liquid goes straight through me, but increasing salt to help retention caused other problems. Couldn't do meds for retention as don't want to aggravate actual bladder pain which is also a symptom for me not just frequency/urgency
  8. helsbells

    Myhill wins Judicial Review at High Court

    Stunning news Craig and thank your self too for all your hard work, I for one without sufficient energy am extremely grateful to all those of you who have found enough to help organise things. very cheering news.
  9. helsbells

    Aldara imiquimod - giving me cold

    I am in the category of never getting colds. This cream is usually used for genital warts I believe but as I have such long standing veruccas they have prescribed it for them have used a very small amount of this cream on a small wart on my hand and one on foot, leaving others for now wary of...
  10. helsbells

    The Problem With Morning Pulse Pressures

    i would agree that keeping pure fluids up with the caffeine is also very wise - i too think this is a blood volume issue. I think my problem with a massive increase in salt was that i wouldn't say my Bp is universally low like some just very unstable and massively increasing salt seems to do...
  11. helsbells

    The Problem With Morning Pulse Pressures

    or two...coffee helps me also as it is a vasoconstrictor (Sp?) and helps force a bit of blood up to my noggin. people who are helped might want to check out the POTS/EDS angle. I was "told" i had floppy blood vessels as a result of poor quality external sheething due to the connective tissue...
  12. helsbells

    Soy and Irregular Periods

    It does the same to me early and much heavier bleeds. I can eat very small amounts of tofu once a fortnight or say a teasponn of soy sauce in a recipe for two once a fortnight but i too am very wary of it.
  13. helsbells

    Making sense of fatigue - Julia Newton editorial in Occupational Medicine

    I did try to find this out as she wouldn't see me.
  14. helsbells

    Making sense of fatigue - Julia Newton editorial in Occupational Medicine

    Yes I suppose it could be read like that Wesseleys veiled attempt to take power from anyone who is positing an alternative hypothesis to himself - he would be particularly concerned (threatened) as she works within the NHS were he is used to the monopoly. It is amazing how vigilant he is and...
  15. helsbells

    Anyone feel better when they get the flu or a cold?

    I feel much better - my best ever day is the day before and it feels like fairy sleep compared to my normal sleep - but it happens so rarely
  16. helsbells

    Making sense of fatigue - Julia Newton editorial in Occupational Medicine

    It sounds to me like he just doesn't like anyone attempting to divorce the mind body connection. Otherwise he becomes redundant, or relegated to an appropriate supportive role. My NHS phych. was the same he just wouldn't have that your state of mind didn't influence your health no matter how...
  17. helsbells

    Tooth Extractions - Things to Consider

    I understand this and it must put you in a dreadful quandry. My cracked tooth which is giving me a lot of nerve ATM, it is being suggested that i have an implant. I would sooner live with the gap but I know for a fact i am a universal reactor so wouldn't take the chance, so much auto-immune...
  18. helsbells

    Tooth Extractions - Things to Consider

    It might be worth bearing in mind if you have EDS you may have to opt for the standard local anasthetic as I did. An EDS consultant told me that when people get as far as seeing him and say the local anasthetic didn't seem to have any effect at the Dentist he is so confident it is almost a...
  19. helsbells

    Perrin/lymph drainage/massage: makes sense or not?

    Cloud I think it would depend. I found sauna's great for detox but terrible for dysautonomia and I don't find FIR any different from any other saunas in this respect. Hey Carol, hope your doing ok
  20. helsbells

    Tooth Extractions - Things to Consider

    It was an NHS Oral and maxillofacial surgeon - but i paid privately to get it done. There is a dental hospital in my city but I was not considered an emergency so could have been waiting months plus could have been an overseen trainee - i really had to minimize chances of infection due to...
  21. helsbells

    Klonopin-Side effects and switching to another med

    im actually trying to taper down klonopin ATM as I think it is really helpful for reactions/pain but really increases fatigue and motivation. I am having a heck of a time and I have just gone from 2 tabs to 1.5 tabs at night. The withdrawal from this is so prottracted that is the reall...
  22. helsbells

    Tooth Extractions - Things to Consider

    Hey Wayne the problem with my tooth I discussed here a few weeks ago still rumbles on(cracked tooth), i have a temporary filling but as cannot financially/healthwise go for an implant it will come out in the next few months as the nerve pain in constantly in the background. It is a worry...
  23. helsbells

    Panic Attack On Waking

    I literally woke up with a panic attack for about two years when I started this illness at the time way too long a story to go into here got fobbed off with anti-deps which did help me to feel less bummed by the anxiety - I still do get it and mood wise frequently feel worse first thing in a...
  24. helsbells

    Panic Attack On Waking

    This is actually how my illness started many ( :Retro frown:) many years ago. I have been told by Drs that it is a feature of dysautonomia - something to do with autonomic function being more difficult to regulate when supine (i know this seems counter intuitive) but this causes deep tissue...
  25. helsbells

    Perrin/lymph drainage/massage: makes sense or not?

    Ray is a really nice guy but it didn't help me - No spinal corrections stuff though for ME stuff it is pretty gentle.
  26. helsbells

    Significance of MTHFR Dysfunction

    I have severe mcs and am very interested in this thread, particularly that you say it has been helpful for mcs Cal. - do I read the yasko protocol? Are these her tests?
  27. helsbells

    Another(and better?) theory of of ME/CFIDS/FMS/MCS etc.

    Me too Xray! Told over the years that low carb is good but always feel much better on carbs myself - well i say better I actually mean marginally more alive :Retro rolleyes:but you get my meaning!
  28. helsbells

    Camelford drinking water inquest & Wessely

    I remember this - it was truly awful. I am not being glib when I say this but I really don't think SW himself is all there ie not shuffling a full deck himself.
  29. helsbells

    Supine position makes me feel worse, anyone else?

    Ditto Bayly - i can lie down with a pillow but often problems, panicky early morn etc plus when my gastritis at its worse, reflux, nausea etc - laying down totally flat without pillow always makes me sick