ME is not mould intolerance; mould intolerance is not ME

[Esther12]

if we were to start seeing 'ME and cured by Mould' headlines, that would be equally disappointing/misleading/harmful,

I agree that's a concern. But also, there's a lot of grey between any insistance that Julie's (or other people who reported improvement following mould avoidance) illness was definitely ME, or that it was definitely not. There's just so much we don't know about what ME is and who should be classed as having it.

We do. We know that mould doesn't make a blind bit of difference to millions of patients with ME.

The question is whether if someone's symptoms are similar to those of ME, and they treat those symptoms by avoiding exposure to mould, whether that person's illness is/was ME. And there is absolutely no reason to say that it is. Mould intolerance is mould intolerance.

If ME is broadened to mean any not-very-well-understood illness with similar symptoms, then why not call it Chronic Fatigue and include psychological illnesses. Psychological illnesses are real.

ME is ME. It is a discrete illness. It cannot be treated by CBT or GET or mould avoidance. To conflate ME with MI or CF benefits no one and causes only harm.

(And on a personal level, I really don't understand why anyone with MI would want to claim they have ME.)

Lots of people don't benefit from anti-virals... does that let us say with any confidence that anyone who did report an improvement with antivirals did not have ME?

To me, a lot of the anti-mould stuff seems implausible, and I am concerened that if this becomes a focus of any media coverage then this will be harmful for us, but I really think it's best to focus concerns about this on the claims about mould, rather than on the nature of 'ME', where there is even greater uncertainty.

 

[nasim marie jafry]

I agree that's a concern. But also, there's a lot of grey between any insistance that Julie's illness was definitely ME, or that it was definitely not. There's just so much we don't know about what ME is and who should be classed as having it.



Lots of people don't benefit from anti-virals... does that let us say with any confidence that anyone who did report an improvement with antivirals did not have ME?

To me, a lot of the anti-mould stuff seems implausible, and I am concerened that if this becomes a focus of any media coverage then this will be harmful for us, but I really think it's best to focus concerns about this on the claims about mould, rather than on the nature of 'ME', where there is even greater uncertainty.

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 science writer, is informing other respected science writers that she recovered from MECFS by mould avoidance.

I saw Steve Silberman, for example - I know of him because he was shortlisted for Wellcome Book Prize the same year the dreadful Suzanne O'Sullivan book (!) won - tweet recently: "Through the Shadowlands," Julie Rehmeyer's beautifully written and important book on ME/CFS, published today. Yay!"

A high profile writer science is tweeting that Julie's book is an 'important MECFS story'. - I don't agree, I think it is an important mould illness story. This new framing concerns me.

It seems that we can just put any poorly understood illness under the ME banner. I mean where do we stop?! This, of course, is entirely the fault of the medical profession - esp. psychiatrists - in the first place, for turning myalgic encephalomyelitis into a research circus. This conflation of ME with every other fatiguing illness under the sun should never have happened. Therein lies the scandal. Therein lies the *possibility* to frame recovery from any illness as recovery from ME. I am pretty fed up of people saying we don't know what ME is - I know what it is - I have lived it since 1983. I really wish more people would read Melvin Ramsay's book - you have ME right there.

 

[JohntheJack]

Lots of people don't benefit from anti-virals... does that let us say with any confidence that anyone who did report an improvement with antivirals did not have ME?

To me, a lot of the anti-mould stuff seems implausible, and I am concerened that if this becomes a focus of any media coverage then this will be harmful for us, but I really think it's best to focus concerns about this on the claims about mould, rather than on the nature of 'ME', where there is even greater uncertainty.

No, though it may (note: 'may') suggest that not everyone with ME has a persistent viral infection. However, the link between ME and viruses is established and recognized.

But that's exactly the same line taken by proponents of the CBT-GET model: it's not about the nature of ME.

Still no one has explained to me what is gained by conflating MI with ME. A diagnosis of MI excludes a diagnosis of ME. If someone's symptoms are caused by MI and relieved by mould avoidance, then they don't have ME. They have MI.

 

[Esther12]

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 science writer, is informing other respected science writers that she recovered from MECFS by mould avoidance.

I saw Steve Silberman, for example - I know of him because he was shortlisted for Wellcome Book Prize the same year the dreadful Suzanne O'Sullivan book (!) won - tweet recently: "Through the Shadowlands," Julie Rehmeyer's beautifully written and important book on ME/CFS, published today. Yay!"

A high profile writer science is tweeting that Julie's book is an 'important MECFS story'. - I don't agree, I think it is an important mould illness story. This new framing concerns me.

It seems that we can just put any poorly understood illness under the ME banner. I mean where do we stop?! This, of course, is entirely the fault of the medical profession - esp. psychiatrists - in the first place, for turning myalgic encephalomyelitis into a research circus. This conflation of ME with every other fatiguing illness under the sun should never have happened. Therein lies the scandal. Therein lies the *possibility* to frame recovery from any illness as recovery from ME. I am pretty fed up of people saying we don't know what ME is - I know what it is - I have lived it since 1983. I really wish more people would read Melvin Ramsay's book - you have ME right there.

But isn't it the case the Julie was told her illness is ME/CFS? I'm not sure that any of us can be certain that we have 'true' ME/CFS while other do not. I do have concerns about the mould stuff being poltically harmful for ME/CFS, and that there's a tendency in the mainstream media to like simple, positive, inspiring narratives of the sort of Julie's recovery with mould avoidance, over more important stuff like the problems with PACE. But Julie often does make an effort to talk about the uncertanties around ME/CFS and mould avoidance in a way that those telling their personal stories can often fail to do. Some of the mould stuff does mkae me uncomfortable, but tbh, I rarely fully agree with anything anyone else says (or much of what I've said in the past!).

I'm sure that many of us have experienced others trying to deligitimise our own understanding of ourselves, so we'll be aware of the need to tread carefully, and I worry some of the legitimate concerns about the mould stuff can blurr into unjstified criticism of Julie for telling her story. I know that this is hard to get right though, and don't want to act like it's wrong to just raise concerns with Julie.

re whether Julie may have been misdiagnosed: I'm not sure any of us can know. It's possible almost any of us have been misdiagnosed, but often we don't go to the trouble of explaining that. Personally I think it would be good if there was generally more dicussion about the uncertainty around the diagnosis of ME, but that can end up being a confusing distraction from other issues too.

No, though it may (note: 'may') suggest that not everyone with ME has a persistent viral infection. However, the link between ME and viruses is established and recognized.

But that's exactly the same line taken by proponents of the CBT-GET model: it's not about the nature of ME.

Still no one has explained to me what is gained by conflating MI with ME. A diagnosis of MI excludes a diagnosis of ME. If someone's symptoms are caused by MI and relieved by mould avoidance, then they don't have ME. They have MI.

Is 'mould intollerance' even a recognised diagnosis? I don't see anything to be gained by lumping mould intollerance with ME - if there's a worthwhile way of splitting them, it sounds sensible to do so. But from Julie's perspective, she thinks it's possible that a significant portion of those with ME may benefit from mould avoidance, and that improving from mould avoidance is no more reason to say one does not have ME than improving from any other intervention that mostof those with ME do not benefit from.

I share concerns about media coverage that seems to dwell on unfounded concerns about mould and ME, I just think that we need to recognise that there is a lot of uncertainty abou what ME 'really' is and who should be classed as suffering from it.

 

[JohntheJack]

Is 'mould intollerance' even a recognised diagnosis? I don't see anything to be gained by lumping mould intollerance with ME - if there's a worthwhile way of splitting them, it sounds sensible to do so. But from Julie's perspective, she thinks it's possible that a significant portion of those with ME may benefit from mould avoidance, and that improving from mould avoidance is no more reason to say one does not have ME than improving from any other intervention that mostof those with ME do not benefit from.

I share concerns about media coverage that seems to dwell on unfounded concerns about mould and ME, I just think that we need to recognise that there is a lot of uncertainty abou what ME 'really' is and who should be classed as suffering from it.

I don't know re MI, but that would be no reason to group people with MI in with ME.

There's no evidence mould avoidance would benefit significant numbers.

I have been clear all along about what I am saying: If someone's ME-like symptoms are relieved by mould avoidance, then they don't have ME. ME is not mould intolerance and mould intolerance is not ME.

Any benefit someone with ME gains from mould avoidance, is a secondary issue akin to some people's benefiting from CBT. It is false and harmful to say that ME can be treated with mould avoidance. It cannot be.

 

[arewenearlythereyet]

(Note: I'm basically using this thread to learn myself, so any arguments I form aren't sacred to me)

It has been argued is that ME is a postviral condition since the term was used for a specific, postviral condition, for decades prior to the invention of CFS.

Various CFS criteria have been used to 'classify' common symptoms among patients in recent years, creating a patchwork (often referred in research as 'heterogeneous') patient group, where the cause and nature of those symptoms has the potential to be much more diverse.

In most cases, ME isn't formally diagnosed as it has been clinically dumped into the CFS pile.

ME tends to get preferred over CFS because CFS is such an insulting name for the profound disablement patients endure.

But if you have CFS as the direct result of a mould allergy, then ME technically is no longer part of your diagnosis. In this case really, we need new names for various presentations.

It's all pretty complicated to be honest, which presents a challenge for advocacy as toes get inadvertently stepped on.

Like it or not CFS and ME are synonyms therefore there is no distinction between a CFS and ME diagnosis since the names were merged.

There is therefore no sense in trying to distinguish between names or to try and create sub sets based on triggers until we have a clear picture of the mechanics of the disease and it's progression.

Personally I think both names are awful and we should ditch both when more is known about the disease. ME as a name has no more validity than CFS other than semantics about wording and how it sounds. I understand the history and reasons for the passion about what name is used but to say that CFS is one thing and ME is another is just plain wrong.

I'm sure some people are misdiagnosed .....but no one knows the scale of this for the same reasons highlighted above. If you have PEM and the other symptoms in the CCC and you have ruled out all the other options you have ME or CFS or whatever else you choose to call it. Having PEM automatically rules out a lot of things ...hence the need to recognise the diagnostics for this particular symptom. I don't accept poor diagnosis from GPs since the criteria aren't that confusing if you use the correct ones and the GP is educated enough. The main problem is GP education and this wretched BPS interference.

It would be easier to have a specific set of diagnostic biomarkers though and a specialism in this field to help give a bio diagnosis.

So if you were only exposed to mould and you have ME then that tells us something and to me seems just as plausible as viral infection. I doubt that is the whole story, like I doubt that viral infection is the whole story. Unfortunately there just isn't enough compelling evidence one way or another and that is because the causes are unknown.

 

[Esther12]

I have been clear all along about what I am saying: If someone's ME-like symptoms are relieved by mould avoidance, then they don't have ME. ME is not mould intolerance and mould intolerance is not ME.

Any benefit someone with ME gains from mould avoidance, is a secondary issue akin to some people's benefiting from CBT. It is false and harmful to say that ME can be treated with mould avoidance. It cannot be.

You have been clear about that, it's just that I don't think that we can know that. I'm suspicious about the mould avoidance stuff, and some of the specific claims some people make just do not make any sense, but I do not think that we can say that if someone's ME-like symptoms are relieved by mould avoidance, then they don't have ME. We don't know enough about what does cause ME or who should be classed as having it. While I think it's hugley unlikely, it's even possible that most of those with ME have some bizarre form of mould intollerance - maybe only reacting to certain sorts of mould in certain situations? We just don't know.

I'm think that the mould avoidance stuff is likely to be an unhelpful distraction, I just don't think we can act like the diagnosis of ME is such that we can know that mould avoidance relivieving symptoms means that someone cannot have had ME.

 

[nasim marie jafry]

I don't know re MI, but that would be no reason to group people with MI in with ME.

There's no evidence mould avoidance would benefit significant numbers.

I have been clear all along about what I am saying: If someone's ME-like symptoms are relieved by mould avoidance, then they don't have ME. ME is not mould intolerance and mould intolerance is not ME.

Any benefit someone with ME gains from mould avoidance, is a secondary issue akin to some people's benefiting from CBT. It is false and harmful to say that ME can be treated with mould avoidance. It cannot be.

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.

No, though it may (note: 'may') suggest that not everyone with ME has a persistent viral infection. However, the link between ME and viruses is established and recognized.

But that's exactly the same line taken by proponents of the CBT-GET model: it's not about the nature of ME.

Still no one has explained to me what is gained by conflating MI with ME. A diagnosis of MI excludes a diagnosis of ME. If someone's symptoms are caused by MI and relieved by mould avoidance, then they don't have ME. They have MI.

Indeed the link with ME and viruses is well established, albeit poorly understood. I'd bet, 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 after year. Frankly, it seems bizarre to expect us to 'indulge' the mould theory.

 

[JohntheJack]

You have been clear about that, it's just that I don't think that we can know that. I'm suspicious about the mould avoidance stuff, and some of the specific claims some people make just do not make any sense, but I do not think that we can say that if someone's ME-like symptoms are relieved by mould avoidance, then they don't have ME. We don't know enough about what does cause ME or who should be classed as having it. While I think it's hugley unlikely, it's even possible that most of those with ME have some bizarre form of mould intollerance - maybe only reacting to certain sorts of mould in certain situations? We just don't know.

I'm think that the mould avoidance stuff is likely to be an unhelpful distraction, I just don't think we can act like the diagnosis of ME is such that we can know that mould avoidance relivieving symptoms means that someone cannot have had ME.

But why would you or anyone say that they do have ME? And why, in that case, are you prepared to say that someone with ME-like symptoms who is treated with CBT, does not have ME? Surely 'psychological ME' would be just as valid?

 

[Esther12]

But why would you or anyone say that they do have ME? And why, in that case, are you prepared to say that someone with ME-like symptoms who is treated with CBT, does not have ME? Surely 'psychological ME' would be just as valid?

I wouldn't say that someone with ME who is treated with CBT does not have ME. I don't have any ideological position on what treatments may help people with ME, but I do think that people should be spoken to honestly about the evidence on treatment efficacy that we have. The data we have seems to indicate that, even using very loose criteria for ME/CFS, CBT leads to no real benefit for patient's ill-health. I think that some patients do find it good to be able to talk to someone, also I think that while the misleading promotion of CBT as a treatment of ME/CFS leads to real social problems, individual patients can then report that their CBT therapist helps them deal with these same social problems - I can find that a bit annoying, but I don't think it means that they don't have ME. Also, some patients find CBT actively unhelpful.

Some people can report almost anything is helpful: homeopathy, etc. There are a range of things that could play into this in individual cases - co-incidental improvements in health, bias, wish-thinking, etc. It's really difficult to know, and I try to avoidjumping to conclusions.

There are various criteria for ME and CFS around. I don't know how sure we can be about which are best, and I think that there are other areas that are more valuable for advocacy (PACE, etc), while I also recognise that very loose criteria have been used in harmful and misleading ways over the years. I've been told I have CFS, it seems that I would fulfil most of the ME criteria around, but it doesn't really interest me that much. I expect that as progress is made with really understanding the cause of people's symptoms we will see different and more meanginful diagnostic criteria emerge.

 

[nasim marie jafry]

Is 'mould intollerance' even a recognised diagnosis? I don't see anything to be gained by lumping mould intollerance with ME - if there's a worthwhile way of splitting them, it sounds sensible to do so. But from Julie's perspective, she thinks it's possible that a significant portion of those with ME may benefit from mould avoidance, and that improving from mould avoidance is no more reason to say one does not have ME than improving from any other intervention that mostof those with ME do not benefit from.

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 world what it is, makes us who we are.

But this particular narrative is inevitably going to give currency to the notion that ME is triggered by mould - and that by extreme avoidance one can recover. My opinion is that this 'mould cure' should not be elevated above the anecdotal, or given untoward 'authority', that's all.

Someone has linked to this below on Twitter, the advice being: 'I often think of Chimamanda Ngozie's 'The danger of a single story' when reading patients' personal stories'. #mecfs

https://www.ted.com/talks/chimamanda_adichie_the_danger_of_a_single_story

I haven't listened yet but will.

'Our lives, our cultures, are composed of many overlapping stories. Novelist Chimamanda Adichie tells the story of how she found her authentic cultural voice — and warns that if we hear only a single story about another person or country, we risk a critical misunderstanding'.

 

[Nielk]

Like it or not CFS and ME are synonyms therefore there is no distinction between a CFS and ME diagnosis since the names were merged.

CFS is not ME.

ME has a long history appearing in many outbreaks throughout the world. ME was defined by Dr. Ramsay and by international ME experts per the ICC. ME has been coded under neurological diseases since the 1960's in the WHO.

CFS is a government created name which along with government created overly broad criteria like Oxford, Fukuda and currently the IOM - with the attempt to disappear ME.

ME stakeholders have urged HHS to adopt the name ME in combination with ME criteria created by ME experts but HHS consistently refused. In order to further confuse the distinction of the original disease ME, HHS has been using the combination name of ME/CFS - which does not exist. ME/CFS has no ICD coding.

 

[Esther12]

But this particular narrative is inevitably going to give currency to the notion that ME is triggered by mould - and that by extreme avoidance one can recover. My opinion is that this 'mould cure' should not be elevated above the anecdotal, or given untoward 'authority', that's all.

I absolutely agree that it's important not to read too much into individual anecdotes, and that the media can get this wrong in annoying ways. I don't know how much of a problem this currently is with the mould stuff - there have been a few annoying things, but imo it's not been too bad, and Julie has often emphasised that there's not any good evidence for this mould stuff.

I can see that she's in a difficult situation and while she's not doing everything exactly how I'd wish she was, she does seem aware of the problems with the media jumping on an anecdote, and be trying to mitigate it in a way that is unusual.

I think that the best response is to raise concerns about the mould stuff without arguing that Julie's improvement with mould avoidance means that she cannot have had ME.

Also, I've not been following the mould coverage closely, as it's not really of any interest to me, so the coverage could have got worse recently without me realising. I think that 'personal story' stuff that the media likes is so often misleading that I pretty much always skip over it, for any health condition.

 

[ljimbo423]

I personally feel that anything that causes significant ongoing immune system activation or dysfunction, can lead to me/cfs in some people.

This could include mold intolerance, as well as toxic chemicals and pesticides-(that can't be cleared by the body for some reason), heavy metal poisoning, leaky gut, etc. I think it's the ongoing immune system dysfunction that keeps cfs/me "locked" in place.

 

[JohntheJack]

I personally feel that anything that causes significant ongoing immune system activation or dysfunction, can lead to me/cfs in some people.

This could include mold intolerance, as well as toxic chemicals and pesticides-(that can't be cleared by the body for some reason), heavy metal poisoning, leaky gut, etc. I think it's the ongoing immune system dysfunction that keeps cfs/me "locked" in place.

But that's different: that's saying that mould intolerance may lead to ME. I made a point of not denying that possibility.

If mould intolerance leads to ME, then avoiding mould would alleviate any symptoms due to mould intolerance, but the patient would still have ME.

Mould avoidance only treats mould intolerance. It does not treat ME.

If someone's symptoms are simply due to mould intolerance and are treated by mould avoidance, then they have not had 'mould-triggered ME'. They have simply had mould intolerance.

 

[ljimbo423]

If mould intolerance leads to ME, then avoiding mould would alleviate any symptoms due to mould intolerance, but the patient would still have ME.

I respectfully disagree. As I said in my post, I believe anything that causes significant, ongoing immune activation or dysfunction, and therefore significant oxidative stress, can cause and maintain cfs/me.

If one takes away the ongoing cause of the immune system activation or dysfunction- (or the cause/s of the oxidative stress), I believe they should get well.

If it's only mold intolerance that's causing the immune system dysfunction/oxidative stress. Then avoiding mold should alleviate symptoms, unless there are other things causing the immune dysfunction and/or oxidative stress, like a leaky gut, heavy metals, etc.

 

[JohntheJack]

I respectfully disagree. As I said in my post, I believe anything that causes significant, ongoing immune activation or dysfunction, and therefore significant oxidative stress, can cause and maintain cfs/me.

If one takes away the ongoing cause of the immune system activation or dysfunction- (or the cause/s of the oxidative stress), I believe they should get well.

If it's only mold intolerance that's causing the immune system dysfunction/oxidative stress. Then avoiding mold should alleviate symptoms, unless there are other things causing the immune dysfunction and/or oxidative stress, like a leaky gut, heavy metals, etc.

You seem to be saying that in every case of ME there is an ongoing cause of immune-system activation or dysfunction. And since a bout of flu activates the immune system, then anyone ill with flu has ME.

 

[arewenearlythereyet]

CFS is not ME.

ME has a long history appearing in many outbreaks throughout the world. ME was defined by Dr. Ramsay and by international ME experts per the ICC. ME has been coded under neurological diseases since the 1960's in the WHO.

CFS is a government created name which along with government created overly broad criteria like Oxford, Fukuda and currently the IOM - with the attempt to disappear ME.

ME stakeholders have urged HHS to adopt the name ME in combination with ME criteria created by ME experts but HHS consistently refused. In order to further confuse the distinction of the original disease ME, HHS has been using the combination name of ME/CFS - which does not exist. ME/CFS has no ICD coding.

Sorry this is not the case. In the Uk it is the same ever since they decided to merge the names.
as such they are the same from a diagnosis point of view. I was diagnosed with CFS in 2014 using the CCC not the Oxford criteria by an NHS doctor, so I think the government conspiracy argument you present is a little thin. Any poor government decision making is more about bad science low/ineffective advocacy and underfunding than anything more sinister.

ME is not solely down to outbreaks so how do you explain the 50% of people who have gradual onset or the people who don't respond to antivirals? This is not that simple I think.

 

[ljimbo423]

You seem to be saying that in every case of ME there is an ongoing cause of immune-system activation or dysfunction. And since a bout of flu activates the immune system, then anyone ill with flu has ME.

My view is in most, if not all cases of cfs/me, there is either ongoing immune system activation or dysfunction, causing oxidative stress or some other toxin such as heavy metals, etc. causing oxidative stress.

I don't think there has to be ongoing immune dysfunction, however, in many cases, I think there is. I do think there has to be some kind of toxin, causing ongoing oxidative stress. It's very clear that me/cfs is not the flu, unless that flu lasts over 6 months.

 

[Nielk]

Sorry this is not the case. In the Uk it is the same ever since they decided to merge the names.
as such they are the same from a diagnosis point of view. I was diagnosed with CFS in 2014 using the CCC not the Oxford criteria by an NHS doctor, so I think the government conspiracy argument you present is a little thin. Any poor government decision making is more about bad science low/ineffective advocacy and underfunding than anything more sinister.

ME is not solely down to outbreaks so how do you explain the 50% of people who have gradual onset or the people who don't respond to antivirals? This is not that simple I think.

You can read more about this issue in the US here - https://relatingtome.net/2016/08/05/hhs-refuses-to-correct-their-wrongful-branding/