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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. nasim marie jafry

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Sorry, I find it hard to follow long posts/threads, is one of reasons I rarely post on forums, it challenges me cognitively, as it does many of us. I think we have to understand in 1980s in UK there were some v good ME doctors BEFORE Wessely and co - later, they became the architects of PACE-...
  2. nasim marie jafry

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    As I I am not worried about people seeking new diagnoses, I am worried that ME is being moulded by ever-changing criteria to represent every poorly understood illness there is. It makes no sense. As I said I was diagnosed by consultant neurologist early 1983, who confirmed 'presumed ME' with...
  3. nasim marie jafry

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Hello, Of course I agree that one should have concerning non-ME neck problems investigated. But I say again, with RamsayME, the trapezium muscle is often affected and I have had myalgia/feelings of severe inflammation/ pressure in neck/head/ shoulders since early on in my illness. It is...
  4. nasim marie jafry

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I don't think I said there was a downside to getting an MRI if you have *new* neck problems, my whole comment was about people with a robust ME diagnosis now thinking they have CCI, when they most likely don't. It seems relatively rare compared to Chiari too, I believe? I can see that no one...
  5. nasim marie jafry

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Yes, I know they are not the same thing but according to MEpedia they are grouped together under conditions that can cause Cervical Medullary Syndrome, hence I wondered if it is the case that Chiari can 'mimic' ME, so can CCI. https://me-pedia.org/wiki/Cervical_Medullary_Syndrome
  6. nasim marie jafry

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I would never post about anyone else's symptoms but much has been made of this CCI surgery, publicly, that is why I am responding. I think the links with CCI are at risk of being overstated and that can be dangerous, pwME are often desperate for answers and will pursue all kinds of therapies...
  7. nasim marie jafry

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Hey, everyone, I have not been on here for a good few years, I am not much of a frequenter of forums, but I have obviously been aware of Jeff's surgery through Jennifer Brea's commentary and her own publicised (at least, on social media) recent surgery for CCI. Jeff's experience sounds...
  8. nasim marie jafry

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

    Thanks, Charles, I just listened to your piece, a shame you were given such little time trying to correct yesterday's abject nonsense from Crawley and Feilden. I very much appreciate your efforts.
  9. nasim marie jafry

    BBC interview with Ron Davis

    No one more critical than me of the blinkered, shoddy, inflammatory way UK health editors have historically reported on ME, brilliant if someone is finally digging deeper. I can understand Ron Davis must have wondered what on earth was going on with a child protection Q, but the plight of...
  10. nasim marie jafry

    ME is not mould intolerance; mould intolerance is not ME

    Ah, that's interesting, Hip, have not heard this before, though my own naphthalene issues were 18 or so years after ME onset, so no connection for me with mothballs and onset of ME, for sure.
  11. nasim marie jafry

    ME is not mould intolerance; mould intolerance is not ME

    Hey, Snowdrop, Just to say I agree with what you say. I think we are all a wee bit weary on this thread now, but of course all of us with ME - regardless of trigger - have immune systems in disarray. Many have developed allergies/sensitivities. I am learning more about emergence of MCAS and...
  12. nasim marie jafry

    Request to Action For ME to support David Tuller

    If he was chair of BACME, it's not in the least surprising he would have these views. Dearie me, the good gentleman will be disappointed, I fit his criteria for 'good prognosis', except I didn't have early engagement with a good therapist (mainly because I didn't need one, I had a neurologist...
  13. nasim marie jafry

    ME is not mould intolerance; mould intolerance is not ME

    I have, naturally, no personal interest in mould and ME but this thread has resulted in my just listening to a recent radio interview where Julie discusses her book and 'spectacular' improvement/almost 100% recovery from 'ME/CFS' by extreme mould avoidance. She says in the course of the...
  14. nasim marie jafry

    ME is not mould intolerance; mould intolerance is not ME

    I would be quite interested in what others who recover dramatically were diagnosed as suffering from before they did extreme mould avoidance. I note that Julie recommends the author of 'Camp Like a Girl' if you want to do mould avoidance seriously without misstepping. So I looked the writer up...
  15. nasim marie jafry

    ME is not mould intolerance; mould intolerance is not ME

    How Julie is dealing with this situation is not really my concern, she is not a personal friend, all I know is she has published a book about her recovery from ME/CFS by extreme mould avoidance. I see that as potentially problematic. And I just edited my previous post to include what...
  16. nasim marie jafry

    ME is not mould intolerance; mould intolerance is not ME

    Hello, Jesse, No probs, thank you - I was just a bit thrown by this Q on this thread. My own book is a novel, I fictionalised my own experience of ME - if you wish to discuss plasma exchange - which I had as inpatient in neurology ward in 1984 - you can email me on nmjk48@yahoo.co.uk - It was...
  17. nasim marie jafry

    ME is not mould intolerance; mould intolerance is not ME

    Julie claims that her health continues to be good and at times she is close to 100% well - she 'consistently feels good', 'able to exercise as much as she wants' and reactive only to the 'worst buildings'. And even when she has to be cautious at these times she is 'able to live a full life and...
  18. nasim marie jafry

    ME is not mould intolerance; mould intolerance is not ME

    Gosh, of course, J, you are not being unkind, would be bizarre if anyone thought so. I am not being unkind - we are being realistic. ME is not hypersensitivity to mould. It seems fairly rational assertion, given all we know. Scenario of one person: You live in mouldy trailers, build a house...
  19. nasim marie jafry

    ME is not mould intolerance; mould intolerance is not ME

    Sorry for any poss confusion, I just posted above to John instead of Esther then deleted, then reposted to Esther. I am not on here often, don't really have the art of posting sussed.
  20. nasim marie jafry

    ME is not mould intolerance; mould intolerance is not ME

    Except Julie wan't *helped* by mould avoidance she was cured by mould avoidance. That is the elephant in the room. I have a sense that if Julie's mould memoir had come from obscurity and she wasn't a science writer who had challenged PACE - great as that was - that there would much less silence...
  21. nasim marie jafry

    ME is not mould intolerance; mould intolerance is not ME

    You are correct, I think it was by chance some ME patient(s) were found to be recovering also from ME after lymphoma treatment. That is what triggered the Rituximab trials. Let's just say that the 'anecdote' of Bcell suppression in a clinical environment that greatly reduced or reversed ME...
  22. nasim marie jafry

    ME is not mould intolerance; mould intolerance is not ME

    By the same token if someone with an MECFS diagnosis subsequently makes a dramatic recovery by extreme mould avoidance would it not make sense to perhaps question that diagnosis and maybe classify oneself instead as having mould hypersensitivity?
  23. nasim marie jafry

    ME is not mould intolerance; mould intolerance is not ME

    I share your frustration, John. But then we both have Ramsay-defined ME - different viruses, different locations - and have lost decades of our lives to ME since we were undergraduates in 1980s. We potentially have more to lose by these ongoing 'corruptions' and reinventions of what is and what...
  24. nasim marie jafry

    ME is not mould intolerance; mould intolerance is not ME

    Yes, PACE trial/circus results *wholly* overstated even for those who meet Oxford definition. My point more was that the conflation of ME with unexplained fatigue made it possible for PACE researchers in first place to run a trial purportedly studying ME, which patently it wasn't. You couldn't...
  25. nasim marie jafry

    ME is not mould intolerance; mould intolerance is not ME

    I guess we all come at this from our own experiences, we are entirely informed by our own illness experience. The conflation of ME w CFS troubles me hugely because I have seen the harm done by diluted criteria where a poorly understood neuroimmune illness has been subsumed under a CFS umbrella...
  26. nasim marie jafry

    ME is not mould intolerance; mould intolerance is not ME

    You make a very good point. We have no control over a diagnostic label. My understanding is that in the USA those who have a CFS diagnosis are v keen to reclaim as ME. But even then we still don't know who has what. The 'ME/CFS' label is even more confusing. In my own life, although I have a...
  27. nasim marie jafry

    ME is not mould intolerance; mould intolerance is not ME

    This is a question I have posed elsewhere. JR herself has told me she didn't have RamsayME. I would be very interested in someone whose illness has the exact same course as mine: abnormal response to virus followed by years/decades of disability then dramatically cured by mould avoidance. No...
  28. nasim marie jafry

    ME is not mould intolerance; mould intolerance is not ME

    Hey, Esther12, I agree with many of your points, but think worth pointing out that Julie did not only benefit from mould avoidance she *recovered* dramatically by mould avoidance. Julie has every right to tell her story, I am glad she has told her story, storytelling is essential, it makes the...
  29. nasim marie jafry

    ME is not mould intolerance; mould intolerance is not ME

    I'd wager, John, that most - if not all - of us ill for decades with (virally triggered) ME are not persuaded by the mould hypothesis. Those of us who remain ill, year after year year. Frankly, it seems bizarre to expect us to 'indulge' the mould theory. Indeed the link with ME and viruses...
  30. nasim marie jafry

    ME is not mould intolerance; mould intolerance is not ME

    Hey again, Esther12 - My concern, I guess, is that Julie has very much framed her illness as 'ME/CFS' in her book - as far as I am aware she has not questioned that she *may* have been misdiagnosed, having recovered so dramatically on avoiding mould. This has consequences. Julie, a respected...