• 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.

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Search results

  1. R

    Further scientific research on LDN

    I'm sure the containers will be hygienic. According to the pharmacist we contacted, they recommend starting off with liquid and moving onto capsules once the amount is at least 1.5 mg. I'm genuinely touched by your interest and concern, thank you 💙💙💙
  2. R

    Further scientific research on LDN

    I meant oral syringes. I'm not intending to inject myself with anything 💓.
  3. R

    Further scientific research on LDN

    Thank you to everyone who has replied. I've decided to try taking LDN again but starting at a very low dose and increasing very gradually. I already have some 1ml syringes with 2 hundredths of a ml notched on them. Hopefully I can get a prescription in the New year.
  4. R

    Further scientific research on LDN

    Thank you @YippeeKi YOW !!
  5. R

    Further scientific research on LDN

    I recently read an article on the Phoenix rising blog about the scientific research being done into the effectiveness of Low Dose Naltrexone (LDN) as a treatment for M.E. I'm interested in learning more and am wondering if anyone can recommend any further information on it? I'm particularly...
  6. R

    Petition: Appeal to NICE concerning the Guideline Committee for ME/CFS

    Both me and my dad signed but is it still running. Haven't the committee members already been decided? Wish I'd spotted this earlier...
  7. R

    Supplements seem to have zero effect on me

    I think your looking at supplements in rather a simplistic way. I had my mitochondria function tested (blood test) by Dr Myhill. The results suggested my body was producing about half as much as a healthy person's. Subsequently I was given masses of supplements of substances I apparently...
  8. R

    Personal experiences of GET, CBT and specialist NHS clinics in the U.K.

    Thanks for your reply @CreativeB. I was also encouraged to exercise back in 2000, when I was fist diagnosed. Let's just say I spent the next seven years in bed... My health improved as a teenager to the moderate/mild scale. Unfortunately when I crashed at nineteen my parents pressed for a...
  9. R

    Personal experiences of GET, CBT and specialist NHS clinics in the U.K.

    I'm interested in people's personal experiences of CBT, GET and the NHS specialist ME/CFS clinics for a piece of creative writing I'm doing, inspired by the review of the NICE guidelines. All experiences shared will remain confidential as it's a fictional work of writing
  10. R

    Energy saving tips for keeping clean

    Thank you for all the suggestions :). Thank you for your reply @CreativeB but I think a hairdresser would be too stressful for me ATM. The dishwashing liquid is an interesting idea @Judee and the recommendation not to use conditioner. I do always insist they rinse my hair very thoroughly and I...
  11. R

    Energy saving tips for keeping clean

    I've been struggling with washing my hair recently, partly because it takes some energy (though not loads) and partly because I have new carers who are are still getting to grips with washing it. It's true I went for three years without washing it but now I find it gets greasy and itchy after a...
  12. R

    Dealing with anxiety

    I've been suffering from severe anxiety recently, mostly due to fear that my illness is all my imagination + within my control I've been diagnosed 4 14 years by Dr franklin, dr Mitchell, dr sprightly + dr weir I test @50% on the mitochondria scale. But shortly after these my GP surgery asked...
  13. R

    Lipoid acid

    I've been taking. Lipoid acid for heaviness .+ achenes in muscles + found its help to an entent but not a total cute especially on a bad day. Am wondering what others experienced are?
  14. R

    Light a candle to remember M. E

    You can buy pretend candles with plastic flames if ur worried about fire risks :£)
  15. R

    Light a candle to remember M. E

    Light a candle to remember M. E I’m organising a fundraising + awareness raising campaign for M. E awareness week called ’Light a candle to remember M . E. This will invoke Lighting candles to remember M. E Donating E-mailing photos to me to make a collage of the candles that’ve been lit...
  16. R

    Let's do it for ME wristbands brigade

    I am now a year older than the age Alison Hunter was when she died of ME in 1996. I am 20 years old. Alison Hunter had suffered, horrendously, from ME for 10 years prior to her death. Her symptoms included seizures, paralysis, gastrointestinal paresis, heart damage, massive ulceration to her...
  17. R

    Comment by 'Rosa Amor' in 'Finally my letter from Dr Myhill!'

    Please wll someone explain to me?
  18. R

    Finally my letter from Dr Myhill!

    Attached as a PDF
  19. R

    Finally, letter from Dr Myhill in all its glory!

    Hopefully you will see my letter from Dr Myhill. I have uploaded it as a JPEG
  20. R

    Question on recovery

    have been doing Dr Myhills protocol of supplements, sprays and detoxing for a couple of months now. I think it might be making a small difference but I feel stuck. After years of peuseudo recoveries + relapses, I'm scared to try and improve. I also don't feel I know how to though I have lots of...
  21. R

    My Mitochondria results

    Well I have tested positive for all sorts of problems with my Mitochondria function. Great to have some explanations for my strange symptoms of sickness at last. I even told my Mum 'it was the best news I'd had in my entire life'. Dr Myhill sent us (and my GP) a letter explaining it all but its...
  22. R

    Rosa Amor

    • Rosa Amor
    • Blog
    • Blog entries: 6
  23. R

    Transferall to Dr Sarah Myhill

    Hi, I'm nearly 20, had ME for 11 years, 6 months and my name is Rosalind Amor. I have been transferred to a new Dr, Dr Sarah Myhill, since Dr Wights clinic closed along with all his other. She is redoing my Mitochondria tests because apparently Dr Wight, for some odd reason, didn't test them...