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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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Search results

  1. L

    Are endogenous depression and cfs close relatives?

    I was referring to sentiments expressed by forum members, not quoted material like SW. Examples would be questioning whether ME exists, whether muscle weakness in ME exsts, attacking sufferers as being their own worst enemy because they "disengage" with (dismissive) doctors, etc etc. Woe...
  2. L

    Are endogenous depression and cfs close relatives?

    I stand by my comment that was removed. If there's anything unjust it's to appease the biopsychosocial school and that such damaging and abusive myths are being allowed to free reign to be perpetuated on an "ME/CFS" forum, after all the damage that such thinking has done to them, and done to...
  3. L

    Simon Wessely in New Scientist

    There's no evidence in the above he's "reversing his position" - he's been maintaining for years that it's "not all in the mind" but with the implication that it's only the effects of it being in the mind which are then experienced in the body (see his old New Scientist piece). So his above...
  4. L

    Characterisation of cell functions and receptors in Chronic Fatigue Syndrome/Myalgic Encephalomyelit

    "Participants were then excluded if they were ... experiencing symptoms of CFS/ME that did not conform to the Fukuda criteria for CFS/ME" What?! This is crazy, that would mean most (if not all) severe pwME would be excluded - because we typically have 20 or more symptoms. Fukuda has 8 plus...
  5. L

    Exercises for POTS

    Sounds great for people who don't have ME - early fainting is the best outcome you could hope for if you do (but you probably won't) - instead damage to the heart, brainstem etc and permanent severe disability and loss of ability to stand, at best inability to do anything else but lie down for...
  6. L

    The UK Government’s three-pronged strategy for “CFS/ME”

    Given the representation obstructed the case by not submitting most of the evidence, how you know this, and even if you do, how is it in effect any different from showing evidence of abnormalities with exercise physiology which would very much call into question the appropriateness of CBT/GET as...
  7. L

    Patient Experience: "What Bronllys taught me about pacing."

    All graded activity is contraindicated in ME - it's simply wrong and potentially dangerous, AT BEST it's still cruel as it reduces quality of life because that person "lifting their arm from bed" now can't lift their arm to use their phone or laptop or whatever as they've just redirected all...
  8. L

    Mild Brain Stimulation???

    You have no idea what the effect will be on the physiological broken system of ME except to say "stimulation" is usually not good, and these researchers sound like they'd know even less than we do about ME. A slight headache? Yes for people with primary depression maybe, pwME already get...
  9. L

    Intractable constipation

    Constipation might not be due to diet but could be due to ATP deficiency, you could try adding CO-Q10, L-carnitine, and D-Ribose (which has a slight laxative effec but some people find it a irritant). The gut is low priority in energy-sucking diseases compared to the heart. It could be...
  10. L

    Intractable constipation

    Many people with ME or other cause of dysbisis can't tolerate insoluble fibre, in fact some can't tolerate soluble fibre either - it's all carbohydrate and can be fuel for the microbes involved. I can't eat veg unless they're very well cooked (to break down fibre) and only in small amounts...
  11. L

    ImmunoPro in the UK + RX vs non-RX

    Thanks Indigophoton. I just found that EvolutionOrganics have it as well.
  12. L

    Desperate for help:

    Genital ulcers and visible veins makes me wonder if you've looked into Behçet's disease: http://en.wikipedia.org/wiki/Beh%C3%A7et%27s_disease
  13. L

    Desperate for help:

    Hope you find something that helps as it sounds miserable -- sounds like they should be doing more to find the cause of the colitis and in supplementing nutrients.
  14. L

    ImmunoPro in the UK + RX vs non-RX

    Does anyone have a recommended place to get ImmunoPro RX in the UK? The Garden Pharmacy appear to no longer stock it. Also, is there any difference between the "RX" stuff and the tubs that don't have that on, was this just a change in branding or something?
  15. L

    Heart disease supplements

    I've never heard of CoQ10 damaging the liver and kidkneys, (unless the liver and kidkneys are already diseased in which case pretty much anything puts a stress on them) would be interested to know the source of this claim.
  16. L

    Heart stops, then thumps

    And autonomc disease can cause heart block, so it's not gauranteed the better option.
  17. L

    Heart stops, then thumps

    I'm glad if that's the case for you Valentijn, but unfortunately heart failure is the first biggest cause of ME death after suicide. We also have an increased risk of adverse vascular "events" and perhaps, heart block. Palpitations can be (usually) benign but should be considered warranting...
  18. L

    Stress management skills, neuroimmune processes and fatigue levels in persons w/ CFS (Lattie et al.)

    Hey people, don't you get it, if you're sicker than someone else it's only because you're incompentently managing your emotional stress, nothing to do with severety, progression, pathology subgroup, medical a or social practical support. Whereas the people with a good outcome are reaping the...
  19. L

    CFS: Hidden in Plain Sight

    Btw I look upon neuroimmune as a category, not a name, so it doesn#t have to be 100% unique and you can't have an everything-category. I don't think associating with "non HIV AIDS" is a good idea, as that seems a lot of semantics (other immunodificiencies are already known other than AIDS)...
  20. L

    CFS: Hidden in Plain Sight

    These may not be any more unique than neuroimmune. You might as well say it doesn't cover cardiology, genetics, gastroentestinal etc. You're going to have a hard job finding a name or brief description which describes every single system/organ affected or every single complication. Neuro-immune...
  21. L

    UK NHS Online Clinic for August is CFS/ME & Fibromyalgia

    Thanks to everyone who asked incisive questions and made informed comments on that appalling clinic site, both there and here. Would have done something myself but been too sick recently without doing myself a mischief in the short (and sour) time it was open. Re the legality of Bavington's...
  22. L

    Positive and interesting ME experience with an NHS consultant

    The exact specialism doesn't always mean much by itself. My local "fatigue"/CFS clinic is based in and fronted by immunologists, but they're job - how they see it - is to do the arbitrary tests to exclude you (they likely see anyone with Oxford-esque "unexplained fatigue") from having a...
  23. L

    Is M.E. MS Light?

    I think the main difference is that ME directly involves a wider range of bodily systems while MS is more concentrated, Dr Hyde said something to this effect that makes ME more diffuse but MS more fulminant. MS expert Dr Poser has looked at MRIs of both and said he can tell the difference from...
  24. L

    IACFS/ME 2014 conference - call for abstracts

    "All topics in the field of fatigue are welcomed." More irrelevent BS then, because I guess the perception of "M.E" isn't distorted enough by being de-explained and de-specified by "fatigue". Maybe there'll be some exciting news about the IACFS' plan to have us all managed by miracle-working...
  25. L

    CDC Study Must Include CPET, NK Cell and Viral Testing, Advocates Insist

    "Abnormally low NK Cell activity and high viral loads are consistent findings in patients with ME/CFS. " They're also found in patients with clinical depression, apparently, so it might be better to concentrate on something else. Reduced T-cell responsiveness &/or T-reg abnormality, muscle...
  26. L

    Can't breathe when laying on my right side

    I get this as well with palpitations too, sometimes on the left as well when really bad. Usually if I'm rested long enough it will go away or be mild enough to not need to turn over, but that can take hours if I've been upright or active too late or in a relapse. Interesting to know others have...
  27. L

    Launch of the UK Research Collaborative

    For some years now, Wessely and the press have been associating FOIs with "harrassment". The journalist Michael Hanlon has now just repeated his vague accusations that ME charities took part in harrassment, maybe orchestrating it. So it's not overinterpreted, these accusations are already...
  28. L

    Is there a quick way to heal leaky gut / dysbiosis ?

    Fasting for any length of time is dangerous for pwME; because of our abnormal metabolism we very rapidly go into ketoacidosis, which can overwhelm our already poor kidney function, push injured muscles into rhabdomyelosis, and even wind up aggravating cardiac problems. It's basically a...
  29. L

    Most important supplements...

    Just a word to say that D_ribose lowers blood sugar, I've seen people recommended only taking it if you're going to eat something sweet afterwards to counteract that. But a bigger problem I had on it was gut dysbiosis. Could encourage candidiasis too, you've probably seen Dr Myhill say iit can...
  30. L

    Science Media Centre: Anniversay Brochure: "Threats of Persecution"

    I don't agree with hate mail but I can't agree with this either. The more CBT/GET is done by the incumbent school, the more the evidence base is seen to be strengthened. Does't matter whether CBT/GEt actually works or not, as the PACE fiasco shows, they'll damn well make sure all and sundry...