• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

ME is not mould intolerance; mould intolerance is not ME

JohntheJack

Senior Member
Messages
198
Location
Swansea, UK
Having dodgy researchers use some arguments doesn't necessarily mean that there's anything wrong with the arguments. I'm not sure that there is a meanginful category of 'pschological CF' at the moment. We always want to be trying to provide the most meaningful diagnosis possible, and trying to avoid lumping together people with different health problems, but that can be difficult to actually achieve. Not of the various criteria for ME or CFS seem likely to be perfect at identifiying one 'true' group with a single cause of ill-health.



Right, so surely in reality there aren't people who have recovered via mould avoidance being given a diagnosis of ME, and your question about "what is gained" by giving them an ME diagnosis doesn't reflect how people actually get diagnosed with ME.



In reality, I'm not sure that we have a good way of identifying people like this, and once they have been successfully treated by mould avoidance (assuming anyone is), in what situation would they then be given a diagnosis of ME? It's very difficult to assess 'what is gained' in an almost unimaginable situation.



Because they fulfil the criteria for ME.



We don't know what ME is, and cannot be certain that mould intollerance is not a cause of ill health for some (or even all) of those with ME. A lot of the mould stuff sounds like BS to me, but I think it's best to criticise the specific problems with it rather than jumping to the assertion that we know someone with MI did not have ME.

But if someone has been diagnosed as having ME but then discovers they have a mould intolerance, why would they want to persist with the ME diagnosis? Why not just accept they had MI? What's to be gained with persisting with the ME diagnosis?

But they don't fulfil the criteria for ME because their symptoms were the result of MI. Just as someone who, it turns out, has Lyme or a thyroid problem or MS, never had ME, despite wrongly (in some cases) having been diagnosed as having it.

MI precludes a diagnosis of ME, just as MS or Lyme do, because ME symptoms have to be unexplained by other causes.

Why go to all these lengths to include people who have mould intolerance? I'm baffled.
 
Messages
1,478
But if someone has been diagnosed as having ME but then discovers they have a mould intolerance, why would they want to persist with the ME diagnosis? Why not just accept they had MI? What's to be gained with persisting with the ME diagnosis?

But they don't fulfil the criteria for ME because their symptoms were the result of MI. Just as someone who, it turns out, has Lyme or a thyroid problem or MS, never had ME, despite wrongly (in some cases) having been diagnosed as having it.

MI precludes a diagnosis of ME, just as MS or Lyme do, because ME symptoms have to be unexplained by other causes.

Why go to all these lengths to include people who have mould intolerance? I'm baffled.
Sorry to but in...but isn't it equally possible you can have both conditions or that there is a progression of disease that causes the symptoms? Many people with ME have POTs but these are two distinct diseases. In another thread someone else is on the autistic spectrum and has ME.
 
Messages
13,774
But if someone has been diagnosed as having ME but then discovers they have a mould intolerance, why would they want to persist with the ME diagnosis? Why not just accept they had MI? What's to be gained with persisting with the ME diagnosis?

They may think that MI is an important part of the explanation for ME?

But they don't fulfil the criteria for ME because their symptoms were the result of MI. Just as someone who, it turns out, has Lyme or a thyroid problem or MS, never had ME, despite wrongly (in some cases) having been diagnosed as having it.

Surely you've come across people who have been diagnosed with Lyme post-ME, and now claim that Lyme is the cause of ME. I think a lot of the alternative Lyme stuff is dodgy, and I'm suspicious of the MI stuff, and I wouldn't insist that people people told these issues are the cause of their problems did not have ME.

MI precludes a diagnosis of ME, just as MS or Lyme do, because ME symptoms have to be unexplained by other causes.

Doesn't that relate back to my rituximab comparrison? Does any recovery following treatment indicate that someone does or does not have ME? We don't know the cause of ME, and it could be that there are a range of causes and factors that affect different people in different ways. I think that it's best to be cautious in terms of telling people whether or not that had ME.

Why go to all these lengths to include people who have mould intolerance? I'm baffled.

What lengths?
 

JohntheJack

Senior Member
Messages
198
Location
Swansea, UK
Sorry to but in...but isn't it equally possible you can have both conditions or that there is a progression of disease that causes the symptoms? Many people with ME have POTs but these are two distinct diseases. In another thread someone else is on the autistic spectrum and has ME.

Yes, I did make clear in my first post, I don't question that. As you say, though, two distinct illnesses.
 

JohntheJack

Senior Member
Messages
198
Location
Swansea, UK
They may think that MI is an important part of the explanation for ME?



Surely you've come across people who have been diagnosed with Lyme post-ME, and now claim that Lyme is the cause of ME. I think a lot of the alternative Lyme stuff is dodgy, and I'm suspicious of the MI stuff, and I wouldn't insist that people people told these issues are the cause of their problems did not have ME.



Doesn't that relate back to my rituximab comparrison? Does any recovery following treatment indicate that someone does or does not have ME? We don't know the cause of ME, and it could be that there are a range of causes and factors that affect different people in different ways. I think that it's best to be cautious in terms of telling people whether or not that had ME.



What lengths?

I did say in my first post that I don't deny the possibility that MI may lead to ME. Again, Lyme or MI may trigger ME, I don't deny that (or may not; I don't know). But post-Lyme ME is post-Lyme ME; Lyme is not ME.

No, because some think rituximab may treat ME.

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

What is wrong or unpleasant or unkind about saying someone has mould intolerance but not ME?

My point remains: MI excludes a diagnosis of ME, because the symptoms do not remain unexplained.
 
Messages
13,774
No, because some think rituximab may treat ME.

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

I think that this is the key point.

Some say mould avoidance may treat ME. Some say rituximab may treat ME. Some patients report recovering with rituximab, some report it making no difference. Some patients report recovering with mould avoidance, some report it making no difference.

What is it that justifies the assertion that those who report recovering with mould avoidance did not have ME, while no similar claims are made about those who did/did not recover with rituximab?
 

JohntheJack

Senior Member
Messages
198
Location
Swansea, UK
I think that this is the key point.

Some say mould avoidance may treat ME. Some say rituximab may treat ME. Some patients report recovering with rituximab, some report it making no difference. Some patients report recovering with mould avoidance, some report it making no difference.

What is it that justifies the assertion that those who report recovering with mould avoidance did not have ME, while no similar claims are made about those who did/did not recover with rituximab?

I don't know anything about rituximab, so can't comment.

Mould avoidance treats mould intolerance. Who says it treats ME? What evidence is there it treats ME?

What is wrong or unpleasant or unkind about saying someone has mould intolerance but not ME?

Someone is ill. They discover they have a mould intolerance and treat it by avoiding mould. They didn't have ME.
Someone is ill with the same symptoms. They think they have ME. They discover they have a mould intolerance and treat it by avoiding mould. They did have ME.
How can that make sense?

I don't understand why anyone would want to broaden the definition of ME so as to include psychological CF and mould intolerance. No one benefits from that.

It's also not true that we know so little either about mould or ME. We know that mould makes no difference whatsoever to millions of ME patients. There has been a lot of work done on ME, on the criteria, on the symptoms and on the aetiology.

Mould intolerance is not ME. ME is a discrete illness which is not treated by mould avoidance.
 

nasim marie jafry

Senior Member
Messages
129
I'm not sure that I can provide better responses than the ones I've already posted. Thought that they were pretty good tbh!

But that all started with anecdotal reports from a patient who was receiving rituximab as a part of their treatment for cancer. Even if that were not the case, I still think that my concern about using response to a treatment as a way of saying who does or does not have ME would stand.

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 symptoms as a secondary effect is much more complex/compelling/persuasive than one of avoiding mould. Bcell suppression is immunotherapy. Avoiding mould is avoiding mould. I think this is all getting very silly, FWIW.
 
Last edited:
Messages
13,774
I fear that we might be going in circles. I'll come back and have another think later to see if I benefit from fresh eyes.

Mould intolerance is not ME. ME is a discrete illness which is not treated by mould avoidance.

If you have the evidence needed to prove this then I'd encourage you to share it with Julie.

It's possible that thinking through the comparison with rituximab could also be interesting for thinking about the way in which ME is defined, and how responses to treatments can inform our understanding of who does, and does not, suffer from ME.
 

JohntheJack

Senior Member
Messages
198
Location
Swansea, UK
I fear that we might be going in circles. I'll come back and have another think later to see if I benefit from fresh eyes.



If you have the evidence needed to prove this then I'd encourage you to share it with Julie.

It's possible that thinking through the comparison with rituximab could also be interesting for thinking about the way in which ME is defined, and how responses to treatments can inform our understanding of who does, and does not, suffer from ME.

I think we are as well.

First, it works the other way round: if someone claims mould intolerance is ME, then they have to show how and why.

Second, part of the criteria for ME is, as I said, that the symptoms are not the result of other causes. If the symptoms are caused by mould intolerance, then an ME diagnosis is excluded.
 
Messages
13,774
I think we are as well.

First, it works the other way round: if someone claims mould intolerance is ME, then they have to show how and why.

Who decided that your claim does not bear the burden of needing supporting evidence? Surely all such assertions should be supported by the evidence before they can be safely made. When there is no good evidence either way then people should be cautious and restrained in the claims that they make.

Second, part of the criteria for ME is, as I said, that the symptoms are not the result of other causes. If the symptoms are caused by mould intolerance, then an ME diagnosis is excluded.

Does that mean that ME is, by definition, untreatable? Anyone who has a treatment that they think let them recover, be it mould avoidance, rituximab, anti-virals, CBT or anything else, cannot have had ME? To me it seems that you think that there is something distinct about mould avoidance for determining whether or not one had ME, but you've still not shown what this is.
 

JohntheJack

Senior Member
Messages
198
Location
Swansea, UK
Who decided that your claim does not bear the burden of needing supporting evidence? Surely all such assertions should be supported by the evidence before they can be safely made. When there is no good evidence either way then people should be cautious and restrained in the claims that they make.



Does that mean that ME is, by definition, untreatable? Anyone who has a treatment that they think let them recover, be it mould avoidance, rituximab, anti-virals, CBT or anything else, cannot have had ME? To me it seems that you think that there is something distinct about mould avoidance for determining whether or not one had ME, but you've still not shown what this is.

I'm not making any claim. People who claim mould intolerance is ME are making the claim.

No, not at all. The symptoms are explained by mould intolerance, therefore ME is excluded.
 
Messages
13,774
I'm not making any claim. People who claim mould intolerance is ME are making the claim.

Surely this counts as a claim?:

Mould intolerance is not ME. ME is a discrete illness which is not treated by mould avoidance.

Also, why do you think that an ME diagnosis excludes those who improve with mould avoidance, but not other interventions? Just asserting that it would doesn't explain anything.
 

JohntheJack

Senior Member
Messages
198
Location
Swansea, UK
Surely this counts as a claim?:



Also, why would the ME diagnosis exclude those who improve with mould avoidance, but not other interventions? Just asserting that it would doesn't explain anything.

'Mould intolerance is not ME' is simply a statement of fact, as is 'ME is a discrete illness'.

The second part seems like a claim but is not: there is no evidence that ME can be treated by mould avoidance. The burden of proof is on anyone saying ME can be treated with mould avoidance, or indeed bby CBT or GET.
 
Messages
13,774
'Mould intolerance is not ME' is simply a statement of fact, as is 'ME is a discrete illness'.

The second part seems like a claim but is not: there is no evidence that ME can be treated by mould avoidance. The burden of proof is on anyone saying ME can be treated with mould avoidance, or indeed bby CBT or GET.

What evidence shows that it is a statement of fact? Could it not be that there are forms of mould intollerance that are an important explanation for the ill-health of those currently classed as having ME? I think that's very unlikely, but I don't have any good evidence to justify an assertion either way. Also, saying that there is no evidence ME can be treated by mould avoidance is different to asserting that ME is not treated by mould avoidance.

If Julie thinks that mould intollerance may be an important factor in ME, that research is needed, and that her ME was helped by mould avoidance, I can see why she would not find your assertions convincing. It seems that your just giving your opinion, but as if you're issuing statements of fact.
 

JohntheJack

Senior Member
Messages
198
Location
Swansea, UK
What evidence shows that it is a statement of fact? Could it not be that there are forms of mould intollerance that are an important explanation for the ill-health of those currently classed as having ME? I think that's very unlikely, but I don't have any good evidence to justify an assertion either way. Also, saying that there is no evidence ME can be treated by mould avoidance is different to asserting that ME is not treated by mould avoidance.

If Julie thinks that mould intollerance may be an important factor in ME, that research is needed, and that her ME was helped by mould avoidance, I can see why she would not find your assertions convincing. It seems that your just giving your opinion, but as if you're issuing statements of fact.

Because mould intolerance is mould intolerance. ME is ME. They are by definition discrete.

ME cannot be treated by mould avoidance because mould intolerance is not ME.

But that is shifting the argument. I did not deny that mould intolerance may be worse for some ME patients nor even that it may trigger ME.

Which part are you saying is not factual? I'm not asserting anything. ME is ME.

Do you deny that part of the criteria for ME is that symptoms cannot be explained by other causes?
 
Messages
13,774
Because mould intolerance is mould intolerance. ME is ME. They are by definition discrete.

ME cannot be treated by mould avoidance because mould intolerance is not ME.

But that is shifting the argument. I did not deny that mould intolerance may be worse for some ME patients nor even that it may trigger ME.

Which part are you saying is not factual? I'm not asserting anything. ME is ME.

Do you deny that part of the criteria for ME is that symptoms cannot be explained by other causes?

We don't know what causes ME so what do you mean by 'other causes'? Generally ME criteria will exclude other diagnoses which can explain that symptoms of ME, but I've not found where mould intollerance is recognised as a diagnosis. Instead, it seems to be a proposed cause of symptoms.

I don't think that I'm shifting the argument, as I try to keep going back to your words, eg: "Mould intolerance is not ME. ME is a discrete illness which is not treated by mould avoidance."

ME is ME, but to assert that it is not treated by mould avoidance, or that those who recovered with mould avoidance did not have ME, we need good supporting evidence.
 

JohntheJack

Senior Member
Messages
198
Location
Swansea, UK
We don't know what causes ME so what do you mean by 'other causes'? Generally ME criteria will exclude other diagnoses which can explain that symptoms of ME, but I've not found where mould intollerance is recognised as a diagnosis. Instead, it seems to be a proposed cause of symptoms.

I don't think that I'm shifting the argument, as I try to keep going back to your words, eg: "Mould intolerance is not ME. ME is a discrete illness which is not treated by mould avoidance."

ME is ME, but to assert that it is not treated by mould avoidance, or that those who recovered with mould avoidance did not have ME, we need good supporting evidence.

If patients' symptoms can be explained by mould intolerance (or any other cause), then a diagnosis of ME is excluded.

OK, whether diagnosis or explanation for symptoms, it amounts to the same thing.

No, to assert that ME is treated by mould avoidance requires evidence. But in any case, mould avoidance treats mould intolerance. Mould intolerance is not ME.

If someone has mould intolerance and is treated by mould avoidance, then they had mould intolerance. They dd not have ME.

It's straightforward.
 

nasim marie jafry

Senior Member
Messages
129
I fear that we might be going in circles. I'll come back and have another think later to see if I benefit from fresh eyes.


If you have the evidence needed to prove this then I'd encourage you to share it with Julie.

It's possible that thinking through the comparison with rituximab could also be interesting for thinking about the way in which ME is defined, and how responses to treatments can inform our understanding of who does, and does not, suffer from ME.

What evidence shows that it is a statement of fact? Could it not be that there are forms of mould intollerance that are an important explanation for the ill-health of those currently classed as having ME? I think that's very unlikely, but I don't have any good evidence to justify an assertion either way. Also, saying that there is no evidence ME can be treated by mould avoidance is different to asserting that ME is not treated by mould avoidance.

If Julie thinks that mould intollerance may be an important factor in ME, that research is needed, and that her ME was helped by mould avoidance, I can see why she would not find your assertions convincing. It seems that your just giving your opinion, but as if you're issuing statements of fact.


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 on here around the whole ME is caused by mould theory. Again, this is my opinion only.
 

nasim marie jafry

Senior Member
Messages
129
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.