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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. nomad

    Neuropsychiatry referral NHS - any point ?

    I think I've now given up with the NHS. Their attitude to everything is psychosomatic & if a treatment works then its placebo. Unless its CBT or antidepressants. Aside from the Accident & emergency departments & acute care, its a primitive parasitic institution feeding off the public purse...
  2. nomad

    CBD OIL... Anyone tried it? It's legal now.

    I'm currently using a 1:1 CBD:THC strain in the form of edibles for severe muscle contractions. I'm finding it much more tolerable then a pure THC strain. The addition of CBD has reduced the pyschoactive 'buzz' considerably whilst still allowing the muscles to relax. Previously I would have to...
  3. nomad

    Neuropsychiatry referral NHS - any point ?

    I also attended a few sessions at the NHS CFS/ME clinic previously based at Barts hospital in London but now in St Leonards hospital in Shoreditch. They also took the pyschosomatic route offering CBT and graded exercise. Their level of education and what was on offer was embarrassing. After a...
  4. nomad

    Neuropsychiatry referral NHS - any point ?

    I loved the fact that my NHS nuerologist reffreed to neuro-psychiatry as holistic which takes a broad minded approach. I'd never heard such bare faced pseudo-science peddled so brazenly in a NHS hospital. It comes down to the fact that they don't know what the problem is, or rather they do not...
  5. nomad

    Neuropsychiatry referral NHS - any point ?

    Hi @daisybell yes I've tried magnesium and it does help a little but its such pain to apply transdermally.
  6. nomad

    Neuropsychiatry referral NHS - any point ?

    Yes, I strongly feel my issues are related to Inflammation (chronic cytokine expression) amd Immune activation from viral and bacterial co- infections. I did mention this to the nuero and also said I was aware that the NHS does not test for this. I appreciate I will have to go private, and in...
  7. nomad

    Neuropsychiatry referral NHS - any point ?

    @Research 1st thank you for that great post. Exceptionally informative. Yes I first went to the National Hospital at queen Square and saw an incredibly patronising and ill informed doctor there. He simply said there was nothing wrong with me but did order a battery of tests which all came...
  8. nomad

    Neuropsychiatry referral NHS - any point ?

    My neurologist has suggested I see a neuropsychiatrist for my muscle cramping and muscle pain. I'm wary as I do not want my condition to be dismissed as being psychosomatic. Has anyone had any experience with neuropsychiatry and what options they can offer me. Thanks
  9. nomad

    Medical Tourism - Options

    @Abha thanks for the PM :) really appreciate it. For some odd reason it's marked as locked, so I can't message you back !
  10. nomad

    Medical Tourism - Options

    @xrunner thanks for that, I did rule out Breakspear early on as in my case the problems are more complex, and their approach, from the patient feedback I'd read, appeared it probably would not work. Their treatment was also exorbitantly priced and only worth the gamble if you had insurance...
  11. nomad

    Medical Tourism - Options

    @Abha I'd be very interested in any Cape Town recommendations as I'm planning to spend some time there late next year. You can PM me if you wish. Regards India, I've been, and lived there, several times, and more importantly know people who've had very successful diagnosis & treatment from...
  12. nomad

    Medical Tourism - Options

    @xrunner Have you found such a doctor ? How much has it cost you so far ? Has it resolved your problems ?
  13. nomad

    Blood testing Labs in the UK

    thanks @ukxmrv I'd forgotten about Dr Myhill, I've used her before. Is the London group for CFS/M.E ?
  14. nomad

    Medical Tourism - Options

    I'm thinking of countries like India, where blood testing is available directly to patients and the labs are numerous and off high quality. I also want to explore issues such as thyroid, and other hormonal possibilities, particularly using treatment based methods rather just diagnostic. As the...
  15. nomad

    Medical Tourism - Options

    For blood work, and particularly for viral testing. But ideally also, treatment. Cheaper options in countries where the cost will be substantially lower. I'm in the UK, and up against a medical system that simply isn't interested. And the private options are very limited, ill-informed and...
  16. nomad

    Blood testing Labs in the UK

    Does anyone kn know of labs which affordable blood work ? Or is this something I can request from my GP on a regular basis. I'm supplementing and need to know what my mineral levels, before adjusting dose. Also, viral testing. This is a difficult one, but how does one get referred via the NHS...
  17. nomad

    Roadblocks to Successful Methylation Treatment

    Thanks @caledonia I take magnesium transdermally mostly so hard to measure dose. I find oral magnesium doesn't absorb so well. Do you take the potassium daily ? Also, which is better: Potassium Gluconate or Potassium Chloride ? Thanks
  18. nomad

    Roadblocks to Successful Methylation Treatment

    What will be the signs of a potassium deficiency ? Muscle cramping/tension by any chance ? In which case pottasium dosage ?
  19. nomad

    Do Anti-Depressants interfere with Methylation & supplements generally

    Thanks @caledonia I think the roadblocks are situational, having been isolated for the last few years im trying to get back into the swing of things and finding it very difficult. So the AD's would be a short term measure. I'll read through your roadblocks to methylation too, thanks. I'm on...
  20. nomad

    Do Anti-Depressants interfere with Methylation & supplements generally

    Okay, so health, both physical and mental, have taken a sharp downward spiral over the last two years. I've noticed a significant benefit from following the methylation protocol, and using anti-inflammatory supplements (thanks @Hip) but I'm nose diving into extreme anxiety and depression. This...
  21. nomad

    Does Low Dose Naltrexone (LDN) reduce inflammation?

    These guys in the UK will prescribe if you have a listed diagnosis: http://www.prescribe4me.co.uk/LowDoseNaltrexone/Default.aspx
  22. nomad

    Does Low Dose Naltrexone (LDN) reduce inflammation?

    Thanks @CantThink I hope they can prescribe without me still not having a definete diagnosis
  23. nomad

    Does Low Dose Naltrexone (LDN) reduce inflammation?

    I would be very keen to try this if its possible to get a private prescription for it. Anyone ? I have CFS, along with painful cramped muscles, and severe anxiety which leads me to suspect inflammation, particularly brain inflammation.
  24. nomad

    Transdermal B12 with DMSO - Has anyone tried it

    I used to order the Jarrows B12 from iherb, it stayed under the tongue for upto an hour for me. Then I read on here that the quality had dropped, so I stopped using it.
  25. nomad

    Transdermal B12 with DMSO - Has anyone tried it

    I've tried the Country Life one, and yes it dissolved within seconds ! Given how quickly it dissolved I think it might be perfect for use in a transdermal preparation. @South thanks for those two sources :) Wow the powder option is pretty impressive, as is the pure liquid. And the price is...
  26. nomad

    Transdermal B12 with DMSO - Has anyone tried it

    @helen1 thanks, haven't tried Enzymatic Therapy, just had a look on iherb and only found it 1000mcg tablets. Any place i can get hold of 5000mcg tablets (I'm in the UK)? @pela thanks for the link. Looks like DMSO and B12 tablets have been tried with success. I'll be trying a...
  27. nomad

    Transdermal B12 with DMSO - Has anyone tried it

    Not having much success with sublingual B12 - whichever brand I try (apart from Jarrows) doesn't stay longer then 30 seconds in my mouth. Thinking of mixing DMSO with powdered B12 tablets. Has anyone tried it, any suggestions ?
  28. nomad

    CBD OIL... Anyone tried it? It's legal now.

    I've just been looking into Cannabidiol and the reviews are mixed. I'm looking at in relation to anxiety and inflammation. Very interesting connection @Hip between flax and Cannabidiol. I find flax seed oil very helpful. But generally all fats are good for inflammation and anxiety. Great...
  29. nomad

    n-acetylcysteine and methylation

    I've read on this forum that NAC is to be avoided whilst methylating, to avoid a glutathione backup. Is this an absolute or is their a way around this? I'm pretty certain that NAC made a substantial difference for me in relation to inflammation and nerve over-exitocity. Additionally I've been...
  30. nomad

    Pain and spasms - Doctor in the UK - near London?

    Thanks ukxmrv, Prof Davis has since died. I did try and see if there was any other consultant who worked there that I could see privately. At present, my GP is reluctant to refer me to rheumatolgy as I'm currently seeing a nuero. I've not yet received a diagnosis, as neurologist is still doing...