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

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  1. Kes

    Stomach Decline in Extremely Severe ME/CFS

    P.S. Coconut butter?
  2. Kes

    Stomach Decline in Extremely Severe ME/CFS

    Hi @Kailyn really sorry to hear about your husband's situation. Wish I could offer something helpful. For what it's worth I just prayed a binding prayer for him. I wonder if when he is able to eat solid foods again he may be able to eat eggs, houmous..tomato three bean soup..cheese, cheese...
  3. Kes

    Stomach Decline in Extremely Severe ME/CFS

    @GreenGrapes I'm really sorry to hear about your daughter's situation, it sounds really horrendous. I just wondered if you had thought about having her do a Comprehensive Digestive Stool Analysis with professional guidance as to how to approach treatment. Is she able to drink ginger tea? My...
  4. Kes

    Cumin (Cuminum cyminum): Possible PEM Blocker

    Thanks for sharing @Elike that's helpful to know.
  5. Kes

    Cumin (Cuminum cyminum): Possible PEM Blocker

    Thanks for sharing @Elike. :) Can I just ask how you make the tea or do you buy bags of Cumin tea?
  6. Kes

    UK functional medicine or naturopath ?

    That's good @Emmarose47 I hope she can help you make progress. Would be interested to hear how you get on but obviously only providing you feel like you wish to do that. Best wishes
  7. Kes

    UK functional medicine or naturopath ?

    Apologies if this isn't any help. I have a list of UK functional med docs but not yet contacted any of them. Sorry to hear you're finding the wait list is closed. How many have you tried? I have been recommended an Endocrinologist who works privately in London who has a special interest in...
  8. Kes

    Maeve Boothby-O'Neill aged 27 years died of severe ME October 3rd 2021 Exeter UK

    Thank you Countrygirl for sharing this awful news. Really sorry to hear what Maeve went through and for her family and friend's painful loss in such horrific circumstances. It beggars belief that this is still happening. Words fail, it's just despicable.
  9. Kes

    MCAS Myths

    Thanks very much @PisForPerseverance for tagging me on that. Sorry for delay in replying, struggling quite a bit at the moment. Had a quick look. Will look more deeply..p.s. I developed a problem with my feet getting too hot about 3.5 years ago but at some point that stopped and for around a...
  10. Kes

    Getting groggy and weak from small amounts of sunshine

    Thanks Alvin2, yes, I understand. I had considered that but with me, I appear to tolerate the heat fairly well. It just seems to be the sun that's causing me these issues.
  11. Kes

    Getting groggy and weak from small amounts of sunshine

    Hi @Azayliah, yes, I mean it was probably part of his standard protocol but the timing was perfect for me and has helped me massively to not be so sensitive to crashing all the time in that way. Yes retaining too little sodium. Glad your treatment for migraines has helped somewhat. Good luck...
  12. Kes

    Getting groggy and weak from small amounts of sunshine

    Oh yeah I can certainly understand you deciding to stop going to doctors. Those shifting symptoms do sound unusual. I have stayed away from doctors for long periods. I'm in the U.K. A few years ago I felt I had to check out if I had orthostatic intolerance / P.O.T.S. as I had some indications in...
  13. Kes

    Getting groggy and weak from small amounts of sunshine

    Thanks @PisForPerseverance for sharing that. I've not been aware I've had those issues up to now but I will look into it properly. It certainly could explain a few other things too. I seem to tolerate heat pretty well, just the sun that seems to be an issue. Thanks @Azayliah for sharing your...
  14. Kes

    Getting groggy and weak from small amounts of sunshine

    Thanks very much to you both for your replies. I'll ponder on them...:thumbsup:
  15. Kes

    Getting groggy and weak from small amounts of sunshine

    Has anybody got any ideas what could be happening here. Things are getting weirder with me. I noticed last summer for the first time that if I had more than one session in the sun of about 20 minutes which would usually be for lunch and / or dinner then I would feel extra tired and drugged later...
  16. Kes

    There's no place like Microbiome -(Probiotic advice please)

    Thank you @Judee for sharing that and those links. I've not had a chance to look at them yet but I will do and really appreciate you posting them. Sorry @Rufous McKinney, what I had originally wrote some of it wasn't saved when I switched back and forth from another application. I have edited my...
  17. Kes

    There's no place like Microbiome -(Probiotic advice please)

    Howdy 🤠 folks, I've not ventured really into the probiotic world other than an unsuccessful experiment with kefir a few years ago which made me feel rough,more fatigued basically. I'd be nervous about starting out with anything too strong. I am severely affected and am only managing to be out...
  18. Kes

    Is there any consensus on which Vaccine is less of a risk for us?

    Hey Guwop2, thanks very much for that. No worries. It must be very frustrating and when I was more functional I found it virtually impossible to do what I suggested. I wish I'd pondered more on why because if I could have worked that out I likely wouldn't have deteriorated so much. I'm...
  19. Kes

    Is there any consensus on which Vaccine is less of a risk for us?

    I can definitely understand your concern @Guwop2 regarding taking a second dose. I agree with @Blue Jay though regarding it sounding like a good idea to back off on the activity for a while and see if things settle down in the coming weeks and then maybe take it slower than you want to. I...
  20. Kes

    i need help with a crash

    Hi Loba, I'm really sorry to hear you're struggling. Hope things pick up for you soon and something decent turns up for you, homewise..
  21. Kes

    Ivabradine - advice on starting low and going slow. Anyone else managed to build up from miniscule dose?

    Thanks very much @Celandine for sharing your daughter's experience and all the helpful information. Thanks for taking the time to share it all. My brain isn't really functioning now but I'll read through it all again tmrw and yes absolutely re: doctor with vasoconstrictor. I've not got high...
  22. Kes

    Ivabradine - advice on starting low and going slow. Anyone else managed to build up from miniscule dose?

    PS I imagine though with the Ivabradine and timed release Horse Chestnut supplement working for her she doesn't need to wear compression stockings etc..
  23. Kes

    Ivabradine - advice on starting low and going slow. Anyone else managed to build up from miniscule dose?

    Thanks @Celandine that's interesting. Good to know. Do you remember what brand and dose the Horse chestnut timed release supplement she took was please? Does she still take this? Yes I'm taking it for POTS. Does / Did your daughter wear compression stockings or calf compression sleeves or...
  24. Kes

    Ivabradine - advice on starting low and going slow. Anyone else managed to build up from miniscule dose?

    Within a few hours of taking it I became incredibly fatigued and groggy and couldn"t stay awake and also my mood which was fine beforehand sunk considerably and this took another day to wear off...
  25. Kes

    Ivabradine - advice on starting low and going slow. Anyone else managed to build up from miniscule dose?

    Just wondering how you guys who are incredibly sensitive approach this. This drug is supposed to be taken twice per day. I couldn't handle 2.5mg dose so doctor has recommended trying me on tiny granule. I was thinking of taking this for 3 days and then if tolerated adding in a second granule...
  26. Kes

    Advice re: starting drug (Ivabradine) v low and slow

    Sorry didn't mean to post this under news. Just not firing on all cylinders. Don't know how to change it...
  27. Kes

    Advice re: starting drug (Ivabradine) v low and slow

    Just wondering how you guys who are incredibly sensitive approach this. This drug is supposed to be taken twice per day. I couldn't handle 2.5mg dose so doctor has recommended trying me on tiny granule. I was thinking of taking this for 3 days and then if tolerated adding in a second granule...
  28. Kes

    Gluten for punishment

    Thanks @erin. Wow,vsounds like a long time, 10 months. May I ask if you had tested positive for celiac before you cut out the gluten?
  29. Kes

    Gluten for punishment

    Thanks @xebex, yes may be worth giving it a longer shot but am wary of unnecessary giving myself problems like poor Judee above. Got other more pressing fish to fry at the moment
  30. Kes

    Gluten for punishment

    Thanks @xebex. I'm glad things have become so much more bearable for you since giving up gluten. All those symptoms that you had before sound really awful. That is interesting the differences in symptoms manifesting between you and your sister. I have quit gluten a number of times for about 2-3...