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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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Search results

  1. MeSci

    New Book about Thirst in ME/CFS

    I've posted a message on https://www.s4me.info/threads/new-book-on-me-cfs-and-polydipsia-excessive-fluid-consumption-and-excretion.35103/ telling people about it.
  2. MeSci

    New Book about Thirst in ME/CFS

    Thank you very much for this, @crussher - I have downloaded it and will read it when I can. It looks very good!
  3. MeSci

    Anyone got a good constipation remedy?

    I'm getting constipation more often nowadays, probably due to age (I'm nearly 70) but I find that about 3 or 4 squares of Plamil chocolate, sweetened with xylitol, do the trick pretty quickly. Be very careful with xylitol if you have a dog, as it is toxic to them. I have the chocolate twice a...
  4. MeSci

    In memory of Jim Ellsworth, aka jimells

    Hi, @Gingergrrl. His last post here was on Jun 16, 2018, post 24 in (Video) OMF Scientific Advisory Board Member Mark Davis, PhD, Presents An Update on ME/CFS Research He went on to post on a few other places including...
  5. MeSci

    In memory of Jim Ellsworth, aka jimells

    I have just learned of the death of our wonderful contributor @jimells, who campaigned so much for ME. He died on October 16th 2022, but I've only just found out from this post on Science for ME: https://www.s4me.info/threads/james-robert-ellsworth-jimells.32078/ Maybe others would like to...
  6. MeSci

    Dr. Jay Goldstein's Rapid Remission ME/CFS Treatments.

    Could you clarify whether the drugs caused vasoconstriction or vasodilation?
  7. MeSci

    Acetyl L- Glutathione, ATP, Baking Soda, Sam-e & Catalase = No PEM after exercise

    I don't know if it interferes with digestion, but I really need it, so am still taking it. I take about a teaspoonful a day. My digestion is not very good, but it's been like that for a long time. It might not be suitable for everyone.
  8. MeSci

    Tips for Finding Reliable Prescription-Free Online Pharmacies

    The only medication containing Ivermectin for the UK on goldpharma seems to be SOOLANTRA 10 MG/G CREME 45G.
  9. MeSci

    Curing Chronic fatigue - the role of water and salt..?

    Took me ages to find this, as I posted it a long time ago, but here it is: Warnings about taking some meds when ill | Phoenix Rising ME/CFS Forums
  10. MeSci

    Heart beat feeling like it is pounding very hard...feeling and hearing each beat

    You could try cutting out gluten. There are threads on non-coeliac gluten sensitivity, but I can't currently find the most-relevant one/s. It's getting easier to find gluten-free bread. I always use it.
  11. MeSci

    Heart beat feeling like it is pounding very hard...feeling and hearing each beat

    Be very careful about ACE inhibitors - they can reduce your sodium levels severely, as I found out and a relative has too - we both had to go to hospital. We both came off them.
  12. MeSci

    Completely eliminated my severe anxiety symptoms with three supplements!

    Looks like it's this: https://www.emdr.com/what-is-emdr/
  13. MeSci

    Warnings about taking some meds when ill

    Fancy that! I am in the east of Cornwall, but don't come from there, although I have relatives in Devon. What's MBSR? Typically, having said I sleep OK, I had a bad night last night.
  14. MeSci

    Warnings about taking some meds when ill

    I'm on 2.5 mg Nebivolol per day again - it's a beta blocker. I definitely don't need a diuretic as I also need, and take, Desmopressin to prevent excess urination, which I have otherwise. My health is not good nowadays (ME for 24 years), but not as bad as some. I sleep quite well most nights...
  15. MeSci

    brian nicholson detained in psyschiatric unit with me cfs for 3 years

    Unfortunately SSRIs have severe side-effects for many people, including me.
  16. MeSci

    Australian Telehealth MP Campaign

    This was copied from Science for ME: WOULD YOU LIKE PHONE AND ONLINE DOCTOR CONSULTATIONS TO BE AVAILABLE THROUGH MEDICARE IN AUSTRALIA? Your help is needed to make this happen. Tell the Australian Government how much this would mean to you...
  17. MeSci

    POLL: Swollen lymph nodes: Did you have these before getting ME/CFS, or did they only appear after?

    Doing a search and found this post of mine from June 3rd, 2014: "I used to have swollen neck glands almost every day when I woke up, but this has decreased greatly in the past few weeks, which I am guessing is due to the cortisol-raising effects of the 5-HTP. I think I forgot to take it last...
  18. MeSci

    POLL: Swollen lymph nodes: Did you have these before getting ME/CFS, or did they only appear after?

    I've now transcribed a lot more of my health diary, and have an entry in 2001 (6 years after obvious ME) saying: "Whole upper front part of throat seems swollen. Not particularly tender on outside."
  19. MeSci

    Health Notes 2.10.04-29.12.04

    Health Notes 2.10.04-29.12.04 2.10.04 Bad night last night - polyuria both on trying to get to sleep first time & trying to get back to sleep c 0430. Took a Desmotab each time. Successful first time, less so second time. Must have got up at least 10 times. Had had relatively restrained...
  20. MeSci

    Health notes 2.1.04 -23.9.04

    2.1.04 Legs aching badly. Quite a lot of exertion yesterday due to T (cat) weeing on bed. My nails (fingernails anyway) seem to be growing fast again - they had apparently slowed down in the past year or so. Due to candida? Slime again a.m. 5.1.04 Weight seems to be creeping back up - a...
  21. MeSci

    brian nicholson detained in psyschiatric unit with me cfs for 3 years

    I think you mean Pyridostigmine. A brand name is Mestinon.
  22. MeSci

    Why Is Music So Hard for People With ME/CFS?

    Yesterday evening I tried singing higher than the notes which only produced intermittent singing with croaks, and it worked quite well!
  23. MeSci

    Why Is Music So Hard for People With ME/CFS?

    I was just thinking of music this morning. I realised how little I listen to it now, and am very aware now of how my voice has gone croaky - previously I could sing pretty well! I used to play a keyboard (not very well), and tin whistle and recorder (moderately well) and listened to a wide...
  24. MeSci

    Poll for Vitamin D supplement tolerance and calcitriol levels

    There are a lot of threads on UVB lamp exposure, for example here https://forums.phoenixrising.me/threads/how-does-vitamin-d-absorption-work.28654/#post-437187 I'm not using it at the moment as I don't have the energy or the brainpower!
  25. MeSci

    Health Notes 221003 - 261203

    This is the only diary I can find for this year. 22.10.03 Attack of urinary frequency early pm, shortly after rather windy & difficult small defecation. Had a bit of trouble holding on while at vets' surgery. 23.10.03 IBS-type lower abdominal discomfort all morning. Wonder if this is because...
  26. MeSci

    How I put ME/CFS into remission....& even better

    I think (hope!) that coconut oil, which is also saturated, does a similar thing for vegans. I did similar to you, although a vegan version, for many years. It wasn't until I ditched the gluten that I got to a sustainable and healthy weight and lost the constant hunger.
  27. MeSci

    Full recovery- is it possible???

    I notice you're both male, whereas most sufferers are female. I wonder if men tend to recover more often?
  28. MeSci

    Fixing Leaky Gut Helps ME/CFS, and Sometimes Achieves Full Remission

    I decided to try beetroot again. Mistake. Fuzzy head, loose, unhealthy-looking bowel movements, etc. Feel much better just a day after quitting.