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ME is not mould intolerance; mould intolerance is not ME

Discussion in 'General ME/CFS Discussion' started by JohntheJack, May 28, 2017.

  1. JohntheJack

    JohntheJack Senior Member

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    I agree. I think that much of this support for mould intolerance is personal to Julie. If this was someone unknown who was claiming that ME is mould intolerance, there wouldn't be the support.

    I would stress that I'm meaning to be unkind. As I said earlier, there seems nothing objectionable to me to say to someone your illness sounds terrible, but mould intolerance is not ME.
     
  2. nasim marie jafry

    nasim marie jafry Senior Member

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    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, get ill down the line, slowly get worse and worse, get dxd w ME/CFS - we all know how that goes, no effective treatments - but then you do extreme mould avoidance - and indeed are robust enough to even try - most w ME wd simply not be able to - then you recover dramatically, it really seems to be fairly obvious that you had a hellish illness triggered by mould and now you are better, unless you are exposed to mould.

    Why would you still be so very attached to a diagnosis of ME thereafter?
     
    Last edited: May 30, 2017
  3. JohntheJack

    JohntheJack Senior Member

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    Oops.
    *I'm not meaning to be unkind.
     
  4. Esther12

    Esther12 Senior Member

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    As we don't know what explains ME, how can we exclude all other explanations for symptoms without excluding all explanations for symptoms? This takes us back to the rituximab comparison.

    It's only straightforward if we started with good evidence showing what caused ME, and that it was not mould intolerance. As it is, we instead have to deal with a lot of uncertainty.

    I have talked of recovery (I don't know if Julie has spoken of being 'cured', she seems to talk of some on-going symptoms, although being largely recovered - is this right?) eg:

    I think that the lack of discussion of the mould theory reflects general disinterest and the expectation that it's BS. I've not seen anyone promoting it here for years, and when I last saw it there were people pointing out problems with the claims being made. It's possible that I wouldn't think to click on threads about it though.

    Just to be clear - I'm not supporting any claims about the important of mould intolerance. I think it's probably BS.

    I've not seen Julie asserting the ME is mould intolerance. tbh, I don't tend to be interested in personal story type stuff, so I may not have skipped over a piece that concerns you, but what I've seen is Julie saying that she found mould avoidance helpful for her symptoms, even though there's no real evidence mould is an important factor in ME, and that she'd like to see some real research on it.

    I certainly don't think that you mean to be unkind, but I do think that it is unfair to tell someone else that they are wrongly claiming to have had ME unless you have good evidence that this is the case. When we know so little about what causes ME and what might be able to treat people's ME that sort of evidence is hard to come by.
     
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  5. JohntheJack

    JohntheJack Senior Member

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    I didn't say that: I said that if someone's symptoms can be explained, then by definition they do not have ME. ME can only be diagnosed when all other explanations for the symptoms have been ruled out. That is very standard and has been for years.

    I don't see the rituximab connection because it is not about treatment. It is about explaining symptoms.
    In any case, it may well be that as possible treatments become available, ME does keep dividing. That patients who respond to rituximab are seen to have rituximab-treatable illness and not ME. I don't have a problem with that. There's nothing sacred about the ME diagnosis.

    It is perfectly straightforward. ME is a discrete illness. It is ME. It is not mould intolerance. It is that by definition but also from what we know. We know that for millions of ME patients, mould is irrelevant. Therefore mould intolerance is not ME. Again, it may be that some were diagnosed as having ME but with greater understanding of their symptoms, it is clear that those symptoms can be explained and so an ME diagnosis is no longer correct.

    That is the first time I have mentioned Julie, and only then in response to another. I have been careful throughout not to make it about her. First, I don't see what is unfair in saying that if someone says their illness is due to mould intolerance then they do not have ME. I would say the same if their symptoms were due to anaemia or thyroid problems. Second, I'm not saying anything other than the simple fact: mould intolerance is not ME.
     
  6. Jesse2233

    Jesse2233 Senior Member

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    @nasim marie jafry

    This is a bit off topic so forgive me, but for some reason it won't let me send you a message. I'm reading your book (which is great btw) and you talk about having several rounds of plasmapheresis as part of a trial in the 80s. I know it didn't ultimately help, but I was wondering if you saw any temporary benefit, how many rounds you had, and how long you had been sick at that point. I couldn't quite make it out in the book.

    Feel free to PM if you'd like to share privately

    Thanks!
     
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  7. nasim marie jafry

    nasim marie jafry Senior Member

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    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 no longer considers herself disabled'.

    She also claims in her book that 'while extreme mould avoidance doesn't offer an effective, large-scale treatment for this illness, it does strongly suggest that serious research on the connection between mould and ME/FS is urgent'.

    An urgent need for research linking mould and ME/CFS? Really? Urgent?

    I can think of far more urgent aspects of this illness needing studied.

    She is in great danger of overstating the link because of her own experience.

    Julie's experience might surely highlight that some with mould intolerance are actually being misdiagnosed w ME. I can see that honestly being a useful lesson.
     
    Last edited: May 30, 2017
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  8. nasim marie jafry

    nasim marie jafry Senior Member

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    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 a long time ago and I was v severely ill then. Warm wishes, NASIM
     
  9. Jesse2233

    Jesse2233 Senior Member

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    Great, I will send you an email!
     
  10. Esther12

    Esther12 Senior Member

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    Someone's recovering while pursuing a particular intervention doesn't necessarily show that they recovered because of that intervention... and even if they did we would not know what part of the intervention was helpful.

    Also, in the first post in this thread you said:

    ...

    How would we decide whether it is the patients who responded to rituximab who did not have ME, or the patients who didn't respond?

    It does sound more like you're seeing ME as being defined by being untreatable, which would make more sense of your position on mould avoidance, but it different to how I think most people define ME. Maybe it wuold be helpful to narrow this down to a specific criteria for ME? I'm normally not so interested in that sort of thing, as I think that all of the available criteria have their problems, but I thikn that specifics could be helpful here, so which one do you want to use for excluding those whose symptoms are relieved by mould avoidance?

    I spoke more generally than just Julie too, but it always seemed as if this thread did relate to the media attention that she was getting.

    Would you say the same if their symptoms were due to a poorly understood problem with their immune system? What if breakthrough meant it became a well understood problem with their immune system? What if it was only that they thought it was likely that this was the problem, but the evidence wasn't clear? A few times you've stated that this is a simple and straightforward matter, but I really don't think that this is the case.

    I don't think it has yet been proven that mould intolerance is not ME, and even though my hunch is that most of the mould intolerance stuff is BS (and I'm pretty sure some of it is) you've not presented any evidence that shows we can safely assert that ME is not mould intollerance, nevermind something which would convince someone who thought that they had improved their ME with mould avoidance.

    I'd suspect that she is making an overblown need for research in this area as a result of her own experience (although I'm not certain about this). That's less than ideal, but it's still a long way from her asserting that mould intollerance is ME in that way @JohntheJack had sad she had.

    Also, by the standards of people who've been diagnosed with ME, suffered a really bad period of ill-health with it, and then recovered with somthing a bit odd, Julie has been more restrained in her claims in the media than we're used to. That's not to say we should not point out any problems, but I do realise that she's in a strange situation, and I actually think that she's dealing with it better than most, even though I do have real concerns that this mould stuff could make things worse for us.
     
    Last edited: May 30, 2017
  11. nasim marie jafry

    nasim marie jafry Senior Member

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    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 'recovery' for her means:

    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 no longer considers herself disabled'.

    She attributes this dramatic turnaround to extreme mould avoidance. It is not incidental in her memoir that she 'avoided a wee bit of mould and got a bit better'. She did extreme mould avoidance and made a dramatic recovery. It sounds very much like she was unknowingly sensitive to mould, she avoided it, taking extreme measures, and now she's much, much better. That is her story and happy/'miraculous' as it is, she is still very much framing it as a narrative of recovery from ME/CFS, as are the USA outlets publicising her story. And now she reckons we need urgent research into mould and ME/CFS. It seems ludicrous to someone with virally triggered ME, as most pwME are. You must see that, Esther.
     
    Last edited: May 30, 2017
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  12. Esther12

    Esther12 Senior Member

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    Maybe I'm just jaded by years and years of media stories of ME patients who have recovered with this or that. To me, it seems like Julie is better at being cautious in the claims she makes than many of those who came before here - although that's not to say that I think she's handeling perfectly of that we should not criticise the areas where she gets things wrong.

    The media loves feel good recovery stories. It distorts the way society understands lots of things. It's annoying. It's going to keep happening.

    I think that we share a lot of the same concerns on all this, but I don't think that we can jump to asserting things like "if someone's ME-like symptoms are relieved by mould avoidance, then they don't have ME, they have mould intolerance".
     
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  13. Hip

    Hip Senior Member

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    Dr Sarah Myhill has some simple advice on diagnosing mold allergy: she recommends that for diagnostic purposes, people take a two week holiday in a mold-free environment, and seeing if symptoms improve.

    She says that such holidays are probably not going to be possible in the temperate climate of UK itself, so if you can't go on a mold-free vacation, she suggests an alternative: using a dehumidifier to reduce the humidity of your home to 40% or less (which she says kills off all the mold living in the house), and then using a good air filter to remove the mold from the air.

    Of course in the US, there are quite a few deserts to choose from, in order to have a vacation in a mold-free environment.



    On the Health Rising forum just now, I had an idea about why some people with mold illness symptoms improve in the desert: the general assumption is that they are sensitive or allergic to mold, and so in the mold-free environment of the desert they feel better.

    But I thought of a possible alternative (or additional) explanation: that the hot dry desert air might help kill off any chronic mold infection in the nasal and sinus cavities — mold infections that Dr Joseph Brewer hypothesizes may exist in ME/CFS patients' noses.

    Breathing hot dry desert air is known to dry out the nasal mucous membranes, and since mold is killed when there is no moisture, this may kill off these nasal infections more effectively that the antifungal nasal sprays that Dr Brewer is experimenting with as an ME/CFS treatment.

    If this is true, you might also be able to kill the nasal mold infections Brewer thinks may exist in ME/CFS patients by using a dehumidifier in your own home.

    More info in my HR post.
     
    Last edited: May 30, 2017
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  14. Hip

    Hip Senior Member

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    One argument that may link mold, biotoxins and other chemical toxins to triggering ME/CFS is the fact that ME/CFS can appear in severe yet very localized infectious epidemic outbreaks.

    The London 1955 Royal Free Hospital ME/CFS outbreak is one example of a very localized epidemic which afflicted 1 in 10 of the hospital staff, but affected very few people outside the hospital, in spite of the virus being pretty contagious; and the 1984 Lake Tahoe outbreak is another localized outbreak that was severe, but did not spread to the rest of the country.

    I always found it very perplexing that infectious epidemic outbreaks of ME/CFS could cause such severe disease, and yet not spread much further than the localized environment, apart from perhaps some sporadic appearing as the virus spreads outwards. To me, that makes it impossible that epidemic ME/CFS is caused by a virus alone, because if it were just a virus, then that virus would have spread to the whole region or country, and caused the same devastation throughout.

    But it seems that as these viruses leave the vicinity of these outbreaks, they lose most of their ability to cause ME/CFS.

    To my mind, that means there must have been some local cofactor (such as a toxin) present only in the vicinity of the outbreak — a cofactor which in combination with the virus then causes ME/CFS. And as soon as the virus spreads further than the local area containing the toxic cofactor, the virus loses most of its ability to trigger ME/CFS.

    So this argument presents the logical requirement for such a cofactor, and this then makes us consider the possibility of mold, biotoxin or toxic chemical cofactors being present only in the vicinity of the outbreak, acting in tandem with the virus to trigger ME/CFS.


    In the case of Royal Free Hospital, there were investigations into possible toxic chemicals in the hospital environment (including investigations into the use of pesticides, chemicals used in the kitchen and catering, and the paints and materials used during renovations; ref: 1). These investigations came back negative.

    However, I think back in 1955, nobody would have been aware of toxic mold (as there was no knowledge about mold toxicity then), and so would not have looked for it. Thus it is conceivable that there may have been water damage and a toxic mold growth in communal staff rooms in one or more of the hospital buildings, which in combination with the virus, caused the Royal Free outbreak. If the mold infested rooms were used by staff only, that could also explain why it was mostly only the hospital staff who contracted ME/CFS, with very few hospital patients being affected.


    Likewise, in the case of the Lake Tahoe outbreak, Lake Tahoe survivor @Erik Johnson points out that in the year of the epidemic, a bright green cyanobacteria (toxic algae) started growing all over the beach of Lake Tahoe, which he found made him a little sick. Erik says that a toxic cyanobacteria called Microcystis which periodically grows in the Boca Reservoir (located just north of Lake Tahoe) sometimes results in contamination of the water supplies of both Reno and Lake Tahoe. So this Microcystis toxic cyanobacteria may have been one of the biotoxins present during the outbreak.

    Erik also points out that people who were living or working in buildings he knew to be moldy were more likely to get ME/CFS during the Lake Tahoe outbreak (Erik had had a lifelong mold allergy, so was familiar with which buildings in the area had a mold problem).

    Erik Johnson has been championing the theory that toxic mold and biotoxins were the cofactors behind the Lake Tahoe outbreak ever since that outbreak occurred.

    For Erik, it was mold avoidance that was key to recovering from his Lake Tahoe ME/CFS (but remember that Erik was mold sensitive anyway, so this treatment may not work for other ME/CFS patients).

    Erik sometimes posts on this forum (see his posts here).


    So I think the localized nature of the above ME/CFS outbreaks suggests a dual-factor theory for ME/CFS, where a virus may only cause ME/CFS in combination with some immune suppressing factor, such as a toxin.

    One fact that tends to corroborate this dual causal factor theory is Dr John Chia's discovery that an acute viral infection + corticosteroids often triggers ME/CFS (see this post for details of Chia's corticosteroid discovery).

    Dr Chia investigated thousands of ME/CFS patients' case histories, and noted that ME/CFS was often triggered in these patients when corticosteroids were prescribed during the course of an acute infection. Corticosteroids weaken the immune response, so it seem that when the immune response is weakened during the time of an acute infection when you first catch a virus linked to ME/CFS, that creates the conditions necessary for the virus to trigger ME/CFS.

    So with acute viral infection + corticosteroids, we see another example of the dual causal factor theory of ME/CFS.

    I think to toxic algae or mold may have analogous immunosuppressive effects to corticosteroids, weakening the immune response in such a way that allows the virus to trigger ME/CFS.
     
    Last edited: Jul 12, 2018 at 5:27 PM
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  15. JohntheJack

    JohntheJack Senior Member

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    If they don't have mould intolerance and don't respond to mould avoidance, well, then, yes, of course it doesn't apply.

    If someone's ME-like symptoms are relieved by mould avoidance, then they don't have ME, they have mould intolerance.
    But that is the clear and obvious conclusion. It is not my starting point.

    1. Mould intolerance is not ME. ME is not mould intolerance.
    First, that is self-evidently true. The terms are not synonymous. Logically, meaningfully, inevitably, they are not the same thing.
    Second, in practice, that is not true. Mould makes no difference to millions of patients with ME.
    Third, if someone's symptoms are explained by mould intolerance then an ME diagnosis is excluded.

    2. Mould avoidance treats mould intolerance; it does not treat ME.
    First, again, logically this follows: ME is not mould intolerance so is not treated by mould avoidance.
    Second, in practice this is true. Mould makes no difference to millions of patients with ME.
    Third, for something to be claimed as an effective treatment, then there must be evidence. There is no evidence. Until there is evidence, it is not a treatment.
    Fourth, there is currently no treatment for ME.

    3. If someone's symptoms are treated by mould avoidance, then they have mould intolerance not ME.
    First, logically again this follows: ME is not mould intolerance and cannot be treated with mould avoidance and so anyone who is treated by mould avoidance didn't have ME.
    Second, if someone can be treated by mould avoidance then they had mould intolerance. If someone's symptoms are due to mould intolerance then they cannot be diagnosed with ME.

    Please explain how any of those 3 points can be wrong and why.


    I really don't want to get sidetracked on to rituximab. First, as I keep saying, it is not about treatment but about explaining the symptoms. Second, I've already conceded the possibility.
    The following is possible (no more than possible, I stress): it starts off as 'rituximab-responsive ME'; then when more is understood about why rituximab is working on some and not on others, there is type A and type B ME; and eventually it may get to the point that it no longer makes sense to use ME and enough is known for some patients to be diagnosed as 'x immune response' or whatever.
    Complete side issue.

    I have made it absolutely clear on more than one occasion that this is not about whether it is treatable or not.
    It's not even about criteria. In a sense it's about the simple meaning of words. ME is not mould intolerance.

    I've not mentioned the media attention once.

    It's a simple and straightforward matter as I explain in my 3 points above. Just as it is simple and straightforward ME is not anaemia or thyroid problems or cancer.
    If someone's symptoms are explained by mould intolerance or anaemia or thyroid problems or cancer or whatever, then they have that illness. They do not have ME. What is complicated about that?

    That's unfair and incorrect. I have not mentioned Julie except for that once when discussing people's defence of the idea. I have not mentioned the media coverage at all. It's all irrelevant to the central issue: mould intolerance is mould intolerance. It is not ME.
     
  16. JohntheJack

    JohntheJack Senior Member

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    That's a key point. No one denies the possibility of some misdiagnosis and it may that some currently diagnosed with ME may want to investigate the possibility they do in fact have mould intolerance. But that's all.
     
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  17. nasim marie jafry

    nasim marie jafry Senior Member

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    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, she describes herself as having had 'biotoxin illness, having twice become bedridden, and struggled with severe, chronic back pain and PTSD for many years.'


    I do not recognise this as RamsayME, the illness I live, hellish as it sounds.


    This writer, sorry, can't recall her name, too made a dramatic recovery - by living in mould free adapted van.

    That's great, she recovered her health, she found that she too was hypersensitive to mould.

    But she does not as far - as I am aware - frame her recovery as from ME. And why would she?

    As we all know ME is not always, though mostly, triggered by a virus. We do not understand the mechanism of action. Something catastrophic in our immune response causes longterm neuroimmune illness. It is a complex picture.

    My understanding, as John, has pointed out above is if you avoid mould and dramatically recover, almost over night, then you had mould intolerance. If you (hypothetically) had ME triggered by mould intolerance, avoiding mould would not then magically reverse ME.

    Someone else mentioned OP poisoning earlier on thread. Those who previously became ill from sheep dip/organophosphate poisoning in UK did not magically recover by avoiding sheep dip. Many I think became permanently disabled. But I am also not sure OP poisoning is same as ME, though it shares the government ignoring the severity/denying patients' narratives.
     
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  18. Esther12

    Esther12 Senior Member

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    We cannot currently be certain that mould intollerance is not a cause of symptoms for almost everyone with ME. I think that this is staggeringly unlikely, but we just don't have clear evidence. I'd be very critical of anyone claiming ME is mould intollerance, but that does not mean that we can know it is not. Different people could respond badly to different rare forms of mould? Some mould get set off prolonged problems, or trigger problmes with other forms of mould in certain specific circumstances? It all seems very unlikely, and there's no reason to think that mould is important with ME, but there is still some uncertainty here.

    Just because I have not found mould to make any difference to my symptoms does not mean that I can be certain mould does not play a role in my symptoms, and the same will be true for many others.

    If someone recovers when avoiding mould, that still doesn't allow us to be certain the mould avoidance explains their symptoms. What criteria for ME are you using which means that if someone recovers when avoiding mould then they did not have ME? Or that if it has been shown mould intolerance caused symptoms, that they did not have ME? I'd be interested in seeing what other exclusions are included.

    I addressed some of this above, but also, what other possible interventions can we assert do not treat ME without having any good evidence either way? We can say that there is no good evidence mould avoidance treats ME, but we do not have good evidence to show that it cannot, or that improving during mould avoidance shows that one did not have ME. There is currently no good evidence for any treatment for ME, but that doesn't mean that we know individual patients with ME have not found ways of treating their own condition. A lot of the rare reported 'success' from treatment is likely to be down to co-incidence, bias, wish-thinking, etc, but we cannot be certain or make strong assertions either way.

    We can not be certain that mould intollerance is not an important cause of ME, that those who recovered while doing mould avoidance did so purely because of the mould avoidance, and I am not aware of even any consensus on what treatments being associated with recovery should mean that the patient's diagnosis of ME was wrong.


    You did start this thread by saying "If someone's ME-like symptoms are relieved by mould avoidance, then they don't have ME, they have mould intolerance." Following the rituximab comparison, isn't it possible that there's a 'mould intollerance ME'? I think that this is a useful avenue to explore because I don't really understand how your position on mould intollerance could affect other possible causes for ME.

    Is it about a specific criteria that you think needs to be followed, or is it that you've defined ME in a way which means that mould intollerance cannot play a role in causing some people's symptoms? If the former, which criteria? If the latter, which other possible causes of symptoms do you think need to be excluded?

    I'm not always clear what points of mine you are responding to. You quoted some of my post which was responding to Nasim's points about the media.

    I just don't know. I think it's unlikely mould is an important factor in ME, and a lot of the mould avoidance stuff sounds very suspect to me, but it also seems possible that in the right circumstance mould could trigger ME and then some form of mould avoidance could lead to a reversal of symptoms. I think it's very difficult to be certain of anything about this.

    Isn't OP thought to be related to brain damage, rather than some sort of ongoing immunological problem? I don't know what I'm talking about there, but there are all these different factors that can affect different people in different ways and it's very difficult to be sure of anything, or know which people should be classed as having ME and which should not.
     
  19. JohntheJack

    JohntheJack Senior Member

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    Yes, we can. Millions of ME patients are unaffected by mould.
    Unless you're saying ME and mould intolerance are synonymous then my point stands. Are you?

    You seem once again to be unwilling or unable to address my points. Mould avoidance does not treat ME.

    It's not about criteria.

    You said: but it's still a long way from her asserting that mould intollerance is ME in that way @@JohntheJack had sad she had.
    I didn't.

    No, because rituximab is a possible treatment. Mould intolerance is mould intolerance.

    I'm bewildered why anyone would want to confound mould intolerance with ME. It serves no one.
     
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  20. nasim marie jafry

    nasim marie jafry Senior Member

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    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 interview that while mould is widely accepted by doctors as triggering allergies/asthma, it is still considered 'whacko' - her words, not mine - to think that mould might cause neurological illness.

    Julie also says the wider theme of the book is how do we craft meaning in our lives in the face of having so little control.
     
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