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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. Mary

    How to deal with crashing after doing lightning process, Mickel therapy etc?

    @LINE - what sort of elevation pillow is it? Does it just elevate your legs? And, how is it helpful for you? What does it do for you? For all I know it’s quite possible that elevating our legs is a good thing! One of my sisters got me using an ottoman or otherwise elevating my legs while...
  2. Mary

    How to deal with crashing after doing lightning process, Mickel therapy etc?

    @LINE - i’m afraid I don’t know the answer to that. A naturopath told me about this.(as described in the other thread.) and someone. mentioned that it was I think a yoga pose or similar to one. actually someone I know lays on the floor and just puts their legs up against the wall without a...
  3. Mary

    How to deal with crashing after doing lightning process, Mickel therapy etc?

    @Cfs2019 - lightning process etc. are not proven treatments for ME/CFS. I tried Ashok Gupta's protocol back in 2007 and all it did was make me crash. If something makes you crash, you need to stop doing it and learn to pace yourself - what you can safely do without crashing. These...
  4. Mary

    Brain functional connectivity in people with ME/CFS

    @Wayne , have you tried this? And if so, did you see any results?
  5. Mary

    B-Vitamins Saving My Butt (what to do?)

    @grape_scotch - I don't think it's that simple. What do you mean, specifically, by electrolytes? How much of what are you taking? e.g., I have to take 1000 mg of potassium a day, in divided doses to keep my potassium up. I also have to take phosphorous almost daily. But I don't take...
  6. Mary

    Extremely chapped lips

    @Strawberry - I've had chapped lips and sores in the corner of my mouth from B vitamins, I think a deficiency of a particular one, only I'm not sure which one. I take several of the B's individually and was doing well for quite awhile on them but around last November or so my lips were getting...
  7. Mary

    Methylene Blue -- The "Perfect Supplement" For ME/CFS (?)

    I don't think there's one right answer for everyone. When I first took it (2 drops, one in the a.m. and one in the afternoon) it made me extra tired and I slept better. The extra fatigue and sleeping better lasted a couple of days and then suddenly I started getting extra energy AND sleeping...
  8. Mary

    Biomarker study MedUni Vienna

    This seems counter-intuitive to me . . .
  9. Mary

    ME/CFS Experts Express 'Dismay' at Aspects of NIH Study

    Here's ME/Action's very thorough response to the study: https://www.meaction.net/2024/02/29/meaction-nih-study-response/?mc_cid=530d497b91&mc_eid=0e6c43de2e Here's their introductory statement, followed by a very detailed response:
  10. Mary

    Very severe ME patient Millie being abused by Royal Lancaster Hospital

    I received this from chang.org this morning, from Abi Mills...
  11. Mary

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    That's possible. Though my PEM is generally triggered by exertion - whether physical, emotional or social - e.g., a lengthy phone call can cause me to crash, too much physical activity, once I crashed after I spent a very intense 3 hours at night watching a video lecture about cancer - it was...
  12. Mary

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    @Rufous McKinney - you were supposed to be tagged in the above post but I didn't do it right! so here's your tag
  13. Mary

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    I have found the pose described in this post to be very calming, and when done multiple days in a row, my sleep starts to improve. I've been doing it now regularly for a few weeks, and sleep is definitely better. I had avoided doing the pose long-term because it seemed to also stimulate my...
  14. Mary

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    I tried this at my chiropractor's office a few years ago - I thought, aha! a form of exercise I can tolerate, just stand and vibrate for 10 minutes or so - and I tolerated it just fine, until I crashed the next day, like @Rufous McKinney . I don't think I had the toxic overload, just a garden...
  15. Mary

    Very severe ME patient Millie being abused by Royal Lancaster Hospital

    @Countrygirl - do you need to be in the UK to sign the petition?
  16. Mary

    Majority of doctors unaware of Black Box warnings on drugs they prescribe - we can't rely on them for info, have to educate ourselves

    https://www.msn.com/en-us/health/other/new-york-ag-asks-fda-to-double-down-on-warnings-discourage-prescription-for-asthma-drug/ar-BB1iJUTb?ocid=msedgdhp&pc=HCTS&cvid=921b9f53d1864136b8dcf3da904c7b96&ei=45 I should have posted the title of the above article with a hyperlink, like this: New...
  17. Mary

    How to deal with low folate?

    I take potassium glycinate - 200 mg with each meal, 200 mg before bed and 200 mg more middle of the night. But we're all different - some people need more and some need less potassium. Do you have kidney disease? If you don't, low-sodium V-8 or tomato juice seems to be a safe way to get...
  18. Mary

    Horrible reaction to b12 cyanocobalamin

    Cyanocobalamin is a synthetic form of B12 which the body converts into methylcobalamin or adenosylcobalamin. So it should be able to cause overmethylation. I think it should. Niacin helps slow down or stop methylation and if overmethylating is your problem, I don't see why it wouldn't help...
  19. Mary

    How to deal with low folate?

    Why can't you tolerate methylfolate - what are the symptoms it causes for you? Folinic acid is a form of folate and can cause a refeeding syndrome reaction just like methylfolate can. Refeeding syndrome is defined as...
  20. Mary

    Horrible reaction to b12 cyanocobalamin

    @pinkpapaya - you may be overmethylated - your symptoms certainly sound like it. Niacin can slow down or stop methylation. See: https://mthfrsupport.com.au/2020/07/neutralising-a-methyl-reaction-niacin-antidote-instructions/ You can see the list of symptoms linked with overmethylation...
  21. Mary

    B-Vitamins Saving My Butt (what to do?)

    @grape_scotch - a couple of things you might look into: B1 (thiamine HCL) gave me a good boost in energy, followed by severe fatigue, which turned out to be hypophosphatemia (low phosphate) due to refeeding syndrome. I wouldn't call phosphorous a co-factor for B1 - I think refeeding syndrome...
  22. Mary

    Hawthorn berries helping a LOT with sleep

    @sb4 - good question. The hawthorn did indeed stop helping with sleep - not surprising, this happens with everything I try, though I think the hawthorn helped longer than most things I try. But I still take it - I think it is still helping my BP.
  23. Mary

    Daily episodes of blurry vision and pain around eyes

    Right, but cola and all its sugar is really not a good option! Actually I think because of sodas, hyperphosphatemia is more common than hypophosphatemia, but I never drink sodas. I like them but won't go near them. I think they're a huge factor in our burgeoning diabetes numbers. It's crazy...
  24. Mary

    I have more sense than a team of Neurologists

    @Alvin2 - that's horrible! Not that they're terminating you as a patient, but just the nonsense spouted by that "doctor". It's not surprising I guess but it's still awful. I've been seeing an osteopath who actually believes ME/CFS is real and knows a little about it, about as much as anyone...
  25. Mary

    Daily episodes of blurry vision and pain around eyes

    Phosphorous deficiency (hypophosphatemia) can cause double vision. It's happened to me and the double vision went away when I took phosphorous. I started needing extra phosphorous when I started taking B1 due to refeeding syndrome (see...
  26. Mary

    Clinical Trial: IV Albumin for Severe POTS

    @sb4 - I didn’t make the rules or guidelines about this, but as I understand it, the reasoning for limiting membership to persons with ME/CFS was to keep the focus of the forum on ME/CFS. There’s almost nowhere in the world where persons with this illness can find help. There are forums for...
  27. Mary

    Poll about duration of low potassium (or other deficiencies) after b12/folate

    @Bluebluesky - I also experienced refeeding syndrome when I started taking B1. It gave me a really nice energy boost for a day or two and then boom, severe fatigue. I thought, OK, potassium again, but that wasn’t the problem, potassium did nothing for this particular fatigue. and so I stopped...
  28. Mary

    Clinical Trial: IV Albumin for Severe POTS

    @sb4 - from what I understand, initially it wasn’t required to have ME/CFS to join PR but at some point it was made a requirement. But members who had joined prior to that time were allowed to stay. Nobody was asked retroactively to leave, it was just that new members were screened for whether...
  29. Mary

    Clinical Trial: IV Albumin for Severe POTS

    @kushami - Phoenix Rising's policy has changed and persons are no longer required to have ME/CFS to be admitted as members though they should have an allied or related or similar condition and it certainly sounds like you qualify so there's no need for you to stop posting or leave the forum.
  30. Mary

    Clinical Trial: IV Albumin for Severe POTS

    Hi @kushami - from what I understand, the forum guidelines have been changed and members are no longer required to have ME/CFS, though they were at one time. So I don't think there's any need for you to leave. But I want to confirm this with another moderator and will reply back here when I...