Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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Under the Eight Ball movie - Conspiracy theory?

Discussion in 'Other Health News and Research' started by _Kim_, Dec 15, 2009.

  1. Countrygirl

    Countrygirl Senior Member


    Brenda, I'm so sorry to hear of your horrible experience. Sadly, it seems to be quite common in the UK re: my post on OP poisoning.

    My illness started when I moved into a new timber house which was sprayed with a very nasty combination of pesticides. (Pentocholphenol, lindane, dieldrin, and an OP plus solvents). The whole structure of the house was soaked with these chemicals to preserve the wood from pests. I discovered that this particular nasty cocktail was banned shortly as so many folk became ill.

    The London Hazards' Centre - (I think it has been closed down) - sent me a very helpful book about this deadly treatment. It fitted my case exactly. I was told by a scientist, who was involved in the banning of this, that the house would remain toxic for five years - (I hope I have remembered that correctly).

    I tried to follow it up, but met a brick wall and, anyway, I was too ill to fight my corner.

    Best wishes, :)

  2. OverTheHills


    New Zealand
    Hi Back, Kim

    Thanks for the welcome; I really appreciate the site, its helping me at a difficult time.

    It was easy for me to spot what the Sulphite problem was, as chutneys, dried fruits, wine (even in cooking, boo-hoo) etc all did the same thing with the sinus & lymph gland.

    I suppose my sulphite-sensitivity is just an MCS , although I understand some people get asthma which would be a true allergy rather than intolerance.

    It certainly means Xmas food is difficult ("just plain turkey and vegetables please, I never liked wine, christmas pudding, mince pies or any of that stuff anyway" GRRRRR:mad:). But we all have that issue here I suspect.


  3. Daisymay

    Daisymay Senior Member

    PON1 genetic test

    Hi Mersan,

    The test was done via a private doc here in the UK as part of a panel of genes and the actual test was carried out in Europe.
  4. mersan

    mersan Guest

    Wow, I must say you do seem to get somegreat testing done in the UK.

    I'm thinking of sending some samples to Acumen from Canada.
  5. Mark

    Mark Former CEO

    Sofa, UK
    I have lots in common with a lot of what's been posted here. Loads of stuff mentioned sounds a lot like me.

    Loads of foods seem dubious for me but I could well believe sulphites, probably bacon, processed meat, could be key. I resumed from a vegetarian diet during the period when I started to go downhill. Now I'm sensitive to all kinds of things but most meat is OK, but I have unidentified meat and fish details I'm still working on and bacon is a suspect. I seem to have lots of mild sensitivities - not allergies - with some of them being particularly fundamental (and many are confirmed by blood tests although the tests are only through private testing and the NHS word is "I don't know what on earth those funny tests are, but we can't find a thing").

    FIR is one of many things that seemed to work well for me, as part of a self-managed 1-year blitz of loads of treatments followed by selected adjustments. I have improved from permanent symptoms to decreasing and intermittent symptoms during recent years, but still whenever I'm unavoidably exposed to triggers for even a day or two I start to go downhill fast.

    We are of course still waiting for news of those additional suspected triggers to XMRV infection that people suspect, possibly multiple additional co-enabling factors with XMRV, adding up to get to a first-estimate 1/8 - 1/12 chance of CFS amongst the estimated (US) XMRV infected population. Could these sorts of exposures be one of those triggers? Sounds like a case for Sherlock Holmes...or better than that...George? Can some scientific mind suggest mechanisms for co-enabling targeted immune infection by XMRV by organophosphates, organochlorides, PBDEs, etc? - eg could exposures, as co-exposures with XMRV, cause those specific systems to become vulnerable to X-infection, or involve them in CFS infection some other way?

    In general: risking letting random new toxins into your opened up pores can't be a good thing, whether you have become sensitive or not. Why risk it? And bear in mind that it could be other consequences of dietary intolerances that we may be sweating out, or something else? Main reason for FIR I think is to heat the relevant nerve tissue which XMRV is known to target, is that right? The sauna brings up your lymph gland...hmm your blood pressure option does also seem to make sense, but it suggests to me the toxins in the sweat itself may be bringing on a reaction - lymphs swell up with infection, and in my case my sensitivity reactions are sometimes triggered by it when I really start sweating it out - I found that regular mopping with a towel or two were really important. Actually I should have said that in my earlier list of things that worked for me: in your portable FIR (or your IMO-questionable public sauna if you must) mop yourself with a towel periodically, and every once in a while have a cold shower or dip in bath as I said, really important because otherwise you're opening the pores but then leaving whatever your body chooses to sweat out pouring everywhere and infecting everything! I'm concerned it may settle and spread and maybe even move around... :eek:

    Anyway it always seems worth taking all reasonable precautions when testing any particular treatment, so that's what I did and FIR was very helpful for me. I had loads of supplements for that year too. This was with the help of a local private doctor, using treatments based on Dr Myhill's recommendations. I have to say, that year may have been one turning point for me, things did stabilise quite a bit at that time, but other factors were and are seemingly significant too.

    And yes, Christmas dinner on dietary restrictions sucks! :(

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