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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. Skippa

    Beware homepathy

    When you take LDN, you are ACTUALLY taking N. Not a "water memory" of N. but actual N.
  2. Skippa

    Beware homepathy

    Oh, a word on water memory. If you believe that water memory is a real phenomena, and remembers the like for like substance that it was once mixed with, then remember this also. Enjoy your mouthful of human excrement memory, most of our water has been through the sewage system. Yuk. It gets...
  3. Skippa

    Beware homepathy

    Bigly sad.
  4. Skippa

    Beware homepathy

    They will... but then they'll cry and hate me instead of hating quacks.
  5. Skippa

    Beware homepathy

    A warning to fellow PR members. Homeopathy is at best a waste of money. It has been documented many times, it is a bottle of water, you can easily google the bad points of it. So think before you buy! I have even seen it referred to as "a stinking pile of horse shit" No lie. You have been...
  6. Skippa

    Very Sad

    @AndyPR just gone
  7. Skippa

    BPS 3 Patients 0

    PACE check SMILE check Destroy PR check
  8. Skippa

    One day we'll get our Robin Warren and Barry Marshall

    @SilverbladeTE that's not just you ;) However, please expand "SOE" ... my brain can't find a match...
  9. Skippa

    One day we'll get our Robin Warren and Barry Marshall

    I know it's been discussed before, but the old "culprit" for peptic ulcers was stress and lifestyle/mental stuff. I found this small (concise) writeup on the CDC mildly interesting: https://www.cdc.gov/ulcer/history.htm Of particular note is the "In fact, nearly 90 percent of those with...
  10. Skippa

    Observations & questions after a relapse

    The upper body thing... gets me quickly too... instead of looking at the arms etc, I think maybe it's the back/spine... overload my spine and I get a prickly heat that can develop into PEM if I don't do something to avert pronto... Eg, all upper body work is supported by the spine, that is the...
  11. Skippa

    10-year old sufferer speaks out

    Can we do something here on PR to give her our support? Let her know we exist, get the word out, rally round... I dunno... something to increase the volume?
  12. Skippa

    BBC Radio 4: The Film Programme - Unrest

    When oh when will I be able to watch Unrest? And where/how?
  13. Skippa

    Case study of man who experienced full recovery following transcranial direct current stimulation

    Cool, A) did he have to continue treatment daily forever? B) any links to a good brain unit I can buy to, erm, experiment please?
  14. Skippa

    Retuximab coverage

    Hi, I am really pleased to hear your success with Rituximab. I wonder, would you be willing to share any details of side effects? Did you experience any? ... were there any bad effects that offset your gains? Thanks :)
  15. Skippa

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    Hi @MargUK pretty sure that what you are describing is tolerance withdrawal. You can google for more infos. Don't fret, I'm gonna make a longer post reply but can't find the energy atm, I'll post tomorrow. The bluelight forum that @Palmer1997 linked to is great for all things...
  16. Skippa

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    Hi @Palmer1997 many thanks for joining and making your post. Do you know / have any links or further info, re what would be the effects of someone with a high opiate tolerance taking Ibudilast? I'm interested to know if it would plunge them straight in to withdrawal? Can it be taken...
  17. Skippa

    ME/CFS (CFS/ME!) on BBC "Today" Programme NOW - can anyone tune in

    Quit smoking campaign backs ecigs has prevented this from being front page health story ha!
  18. Skippa

    ME/CFS (CFS/ME!) on BBC "Today" Programme NOW - can anyone tune in

    Well that's... really not as bad as I feared... the news bit... and mentioning immune stuff and CBT blah blah (although it doesn't ease the symptoms but never mind) I truly wasn't going to log on at all today... but here we are! Didn't see the bit re Crawley.. still, not a disaster
  19. Skippa

    NICE GUIDELINE ON ME/CFS WILL BE UPDATED! (Sep 20th 2017)

    Hope they don't update it to recommend LP...
  20. Skippa

    NICE GUIDELINE ON ME/CFS WILL BE UPDATED! (Sep 20th 2017)

    Oh poor poor BPS this week started so well... The impending destruction of PR... Not gonna happen! And now this! Woohooooo
  21. Skippa

    NICE GUIDELINE ON ME/CFS WILL BE UPDATED! (Sep 20th 2017)

    Unfortunately, they ARE very good at spin... still, fingers crossed!
  22. Skippa

    NICE GUIDELINE ON ME/CFS WILL BE UPDATED! (Sep 20th 2017)

    Wow @Hutan what you just highlighted there sounds like (on the face of it) the message ACTUALLY DID get through. Wow. Thank you nice people at NICE who are involved to give this due consideration.
  23. Skippa

    NICE GUIDELINE ON ME/CFS WILL BE UPDATED! (Sep 20th 2017)

    Huzzah! Hurrah! Zippa dee doo daaa! Now the mission becomes: make it change in the RIGHT (correct) direction! The battle is won... but the war is far from over!
  24. Skippa

    Why do I shake sleeping when take cinnamon?

    Wow, someone else, my GF has a big intolerance to cinnamon, we thought it was because cinnamol is in a lot of cosmetics which have led to some kind of sensitisation? It's in toothpaste too.
  25. Skippa

    We are the Establishment & it's plainly evident that we don't give a rat's arse about ME

    Aye, I thought they'd finally lost it, or that they let an intern pen the letter. Til about halfway... the thing about being a successful [evil] establishment, is that you can never, ever admit as such. The room can be burning down around you and you have to boldly claim there's no fire here.
  26. Skippa

    Homeopathy poll

    Hi, it's important to note that many "homeopaths" actually sell remedies (eg active substances in the bottle), even though "traditional" homeopathy dilutes it beyond all existence.. Seriously, it's like dropping a sugar cube in the mediterranean off of Italy, and expecting the water to taste...
  27. Skippa

    Please help my understanding of antibody testing

    Wow thanks for all the infos folks! I'm now depending on these tests having just been utterly invalidated by my GP. Went in complaining of my rash, for which I have photos, and neurological tongue and neck stiffness, and a burning/itchy forehead (weird, may not be related) and got offered...
  28. Skippa

    Please help my understanding of antibody testing

    @Jonathan Edwards thanks for the response. Makes me wonder why bother testing again? @duncan sorry I don't know which test. "The standard first line NHS test" if that narrows it down? Also tested for HIV and other things (lots of checked boxes on the form). I've got to wait 2 weeks to just get...
  29. Skippa

    Please help my understanding of antibody testing

    Hi, I'm trying to wrap my head around the usefulness of multiple antibody tests, beyond being able to say "yeah, you've been exposed to xyz". Whilst I believe the methodology applies generically, I've put this in the Lyme forum because this relates to Lyme in my case. I had the test...
  30. Skippa

    Gut Microbes May Talk to the Brain Through Cortisol

    Hello,this is really popular, 3rd thread and counting :)