ME is not mould intolerance; mould intolerance is not ME

[Hip]

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.

Unfortunately the disease classification of "chronic fatigue syndrome" was most likely created with ulterior motives in mind — motives related to the explosion of new ME/CFS cases that appeared in the 1980s, which could have bankrupted or at least severe affected disability insurance companies who were liable to pay billions in disability support for all these new ME/CFS patients.

The beauty about the disease classification of CFS, from the insurance company perspective, is that CFS is categorized as a disease that can have psychological causes (unlike ME whose classification is purely neurological), and this simple fact is enough to get these insurance companies off the hook, thus saving them from paying out billions, because insurance company rules often stipulate that they are not liable to provide long term disability support for psychologically-caused illnesses.

More details in this thread: Fivefold to eightfold increase in the incidence of ME from 1980 to 1989

And if you are interested in the ICD disease code shenanigans that, even to this day, place ME and CFS into different ICD categories (with the CFS disease code still allowing for psychological causes), then see this post.



Basically, if you say you have "CFS", by the ICD definition, you are saying that your illness could have a psychological cause.

Whereas if you say you have "ME", you are stating your illness has a purely biological cause.

 

[Jesse2233]

Setting Julie Rehmeyer's experience aside, is there anyone with classic Ramsay-ME sudden enterovirus onset who has recovered using mold avoidance?

 

[arewenearlythereyet]

Unfortunately the disease classification of "chronic fatigue syndrome" was most likely created with ulterior motives in mind — motives related to the explosion of new ME/CFS cases that appeared in the 1980s, which could have bankrupted or at least severe affected disability insurance companies who were liable to pay billions in disability support for all these new ME/CFS patients.

The beauty about the disease classification of CFS, from the insurance company perspective, is that CFS is categorized as a disease that can have psychological causes (unlike ME whose classification is purely neurological), and this simple fact is enough to get these insurance companies off the hook, thus saving them from paying out billions, because insurance company rules often stipulate that they are not liable to provide long term disability support for psychologically-caused illnesses.

More details in this thread: Fivefold to eightfold increase in the incidence of ME from 1980 to 1989

And if you are interested in the ICD disease code shenanigans that, even to this day, place ME and CFS into different ICD categories (with the CFS disease code still allowing for psychological causes), then see this post.



Basically, if you say you have "CFS", by the ICD definition, you are saying that your illness could have a psychological cause.

Whereas if you say you have "ME", you are stating your illness has a purely biological cause.

Yes I understand all the politics but in the case of diagnosis there is no distinction. The quotes above were making a distinction around symptoms and saying that ME had different symptoms to CFS. My point was that we don't have a choice over the label we are given during diagnosis so we shouldn't discriminate within our own community especially when we don't actually know very much about how the disease works. This is a different point to poor diagnosis.

 

[nasim marie jafry]

Setting Julie Rehmeyer's experience aside, is there anyone with classic Ramsay-ME sudden enterovirus onset who has recovered using mold avoidance?

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 other factors.

 

[nasim marie jafry]

Yes I understand all the politics but in the case of diagnosis there is no distinction. The quotes above were making a distinction around symptoms and saying that ME had different symptoms to CFS. My point was that we don't have a choice over the label we are given during diagnosis so we shouldn't discriminate within our own community especially when we don't actually know very much about how the disease works. This is a different point to poor diagnosis.

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 clear neurology ME diagnosis from pre-CFS labelling in 80s UK, I always make it clear to any medical people I am dealing with that I have ME and not CFS. I do not really know what CFS is since the criteria are so broad. I should say though that saying you have ME doesn't always guarantee you (more) respect! Only 2 years ago, I had a consultant - not ME-related - tell me ME didn't exist. I was furious, felt like I'd been punched, thirty odd years of my life questioned. At my next appointment I took in lots of literature, including the MEA purple booklet and Ramsay's book. I told him if he didn't believe ME existed to take it up with my now retired neurologist. He apologised, but may only have been paying lip service.

 

[nasim marie jafry]

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.

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 which has every illness but the kitchen sink. This conflation led directly to the PACE trial. The conflation helps no one, except psychiatrists and insurance companies. It also often seems the case that those with a more broadly defined CFS *do* make good improvements/recovery after some years - while those with a more stringently defined ME don't. As I pointed out above in the thread, ME as defined by Ramsay includes the most severely impaired physically. It is certainly not in *our* interest to keep this conflation going. It perhaps does not matter so much to those who are happy with a CFS label. Please see Leonard Jason's @centeres excellent work on case definitions. We cannot mix apples and oranges.

 

[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 you don't say why if someone has mould intolerance and treats that mould intolerance by avoiding mould, they could be said to have ME. Why? And what is gained by saying they do have ME

 

[JohntheJack]

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.

What has 6 months got to do with anything? It was invented by the CFS crowd. ME can be diagnosed in less than 6 months and many people are ill for 6 months or longer and don't have ME.

HIV lasts for more than 6 months, so people with HIV have ME but people with flu do not?

 

[arewenearlythereyet]

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 clear neurology ME diagnosis from pre-CFS labelling in 80s UK, I always make it clear to any medical people I am dealing with that I have ME and not CFS. I do not really know what CFS is since the criteria are so broad. I should say though that saying you have ME doesn't always guarantee you (more) respect! Only 2 years ago, I had a consultant - not ME related - tell me ME didn't exist. At my next appointment I took in lots of literature, including the MEA purple booklet and Ramsay's book. I told him if he didn't believe ME existed to take it up with my now retired neurologist. He apologised, but may only have been paying lip service.

Yes, I have a similar experience for both names ME and CFS. My normal GP doesn't see me any more, instead she refers me to the GP in the practice that deals with depression and anxiety cases. My occupational therapist at the CFS clinic took a dim view of anyone renaming it ME ...she said these people were "less cooperative and aggressive" When I returned to work, I used CFS since ME to the layman has had such a bad press.... CFS seemed the lesser of evils. It didn't really matter in the end...I was still put on the scrap heap and treated as a malingerer and eventually "made redundant "when I didn't "recover". Which was clearly their expectation when they expressed this view to me in adaptation meetings etc. "This has been going on for some time now". "What is the expectation of the time that adaptations will have to remain in place". I just concluded that the name means nothing really.

I look forward to the day when we can have the clear bio markers we all deserve so there is absolutely no doubt or wiggle room for anyone (medical or otherwise) to be dismissive of our condition. I also look forward to meaningful treatment to allow us all to maximise our potential. Most important for me is that there is an all inclusive treatment for all affected by the disease both severe and the less afflicted to prevent them getting worse which is of equal importance if the cost vs investment argument is to have any validity.

 

[Esther12]

But you don't say why if someone has mould intolerance and treats that mould intolerance by avoiding mould, they could be said to have ME. Why? And what is gained by saying they do have ME

We don't really know the costs/benefits for any of the ways of diagnosing ME. If there was a simple and easy test for distinguishing who would recover with mould avoidance (maybe no-one?) and who would not, then it would make sense to just have those who would in a seperate category. But we do not have that.

Instead we have a lot of people who fulfil some of the various diagnostic criteria for ME, and some of them report being made better/worse by different things. Some of those who report getting better while doing some treatment/intervention would then like to see research into whether this treatment/intervention will help other patients with ME. I don't see any reason to insist that this means that they did not have ME. Some people reported benefits with Rituximab, and that has led to research on this. Others have reported not benefiting from Rituximab: should we say that one or other of these groups did not have ME?

I'm deeply suspicious of a lot of the mould avoidance stuff, and some of the claims made about it just do not make sense. I just think it's best to be critical of that rather than start claiming tha those who reported improvement, or even recovery, cannot have had ME. That seems a weak argument to 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 which has every illness but the kitchen sink. This conflation led directly to the PACE trial. The conflation helps no one, except psychiatrists and insurance companies. It also often seems the case that those with a more broadly defined CFS *do* make good improvements/recovery after some years - while those with a more stringently defined ME don't. As I pointed out above in the thread, ME as defined by Ramsay includes the most severely impaired physically. It is certainly not in *our* interest to keep this conflation going. It perhaps does not matter so much to those who are happy with a CFS label. Please see Leonard Jason's @centeres excellent work on case definitions. We cannot mix apples and oranges.

I'm familiar with Jasons work, and agree that really wide criteria can be harmful and have been misused. It really seems that the problems with PACE apply even for the loose Oxford criteria, where patients still did not improve. Even some patients who were very seriously ill have reported improvements and near recovery (although this seems to be very rare), and it seems that all of the current criteria have problems and are likely to change as research progresses.

I don't think that there are many people out there who are 'happy' with the CFS label.

 

[JohntheJack]

We don't really know the costs/benefits for any of the ways of diagnosing ME. If there was a simple and easy test for distinguishing who would recover with mould avoidance (maybe no-one?) and who would not, then it would make sense to just have those who would in a seperate category. But we do not have that.

Instead we have a lot of people who fulfil some of the various diagnostic criteria for ME, and some of them report being made better/worse by different things. Some of those who report getting better while doing some treatment/intervention would then like to see research into whether this treatment/intervention will help other patients with ME. I don't see any reason to insist that this means that they did not have ME. Some people reported benefits with Rituximab, and that has led to research on this. Others have reported not benefiting from Rituximab: should we say that one or other of these groups did not have ME?

I'm deeply suspicious of a lot of the mould avoidance stuff, and some of the claims made about it just do not make sense. I just think it's best to be critical of that rather than start claiming tha those who reported improvement, or even recovery, cannot have had ME. That seems a weak argument to me.

It seems to me that you are unwilling or unable to answer my question: if someone has mould intolerance and treats that mould intolerance by avoiding mould, why should they be said to have ME?

 

[nasim marie jafry]

We don't really know the costs/benefits for any of the ways of diagnosing ME. If there was a simple and easy test for distinguishing who would recover with mould avoidance (maybe no-one?) and who would not, then it would make sense to just have those who would in a seperate category. But we do not have that.

Instead we have a lot of people who fulfil some of the various diagnostic criteria for ME, and some of them report being made better/worse by different things. Some of those who report getting better while doing some treatment/intervention would then like to see research into whether this treatment/intervention will help other patients with ME. I don't see any reason to insist that this means that they did not have ME. Some people reported benefits with Rituximab, and that has led to research on this. Others have reported not benefiting from Rituximab: should we say that one or other of these groups did not have ME?

I'm deeply suspicious of a lot of the mould avoidance stuff, and some of the claims made about it just do not make sense. I just think it's best to be critical of that rather than start claiming tha those who reported improvement, or even recovery, cannot have had ME. That seems a weak argument to me.



I'm familiar with Jasons work, and agree that really wide criteria can be harmful and have been misused. It really seems that the problems with PACE apply even for the loose Oxford criteria, where patients still did not improve. Even some patients who were very seriously ill have reported improvements and near recovery (although this seems to be very rare), and it seems that all of the current criteria have problems and are likely to change as research progresses.

I don't think that there are many people out there who are 'happy' with the CFS label.

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 run a trial on MS with simply 'tired' people.

Let me reword my comment above about those 'happy with CFS label'. What I meant was you will tend to find that those not overly concerned about the *conflation* of criteria don't have RamsayME.

Also, re. claims of recovery w Rituximab as part a clinical trial are totally different from anecdotal claims of mould recovery.

 

[Esther12]

It seems to me that you are unwilling or unable to answer my question: if someone has mould intolerance and treats that mould intolerance by avoiding mould, why should they be said to have ME?

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

Also, re. claims of recovery w Rituximab as part a clinical trial are totally different from anecdotal claims of mould recovery.

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.

 

[JohntheJack]

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

Fair enough, but it seems to me you're not directly answering the question. It also seems to me you keep inverting the question, saying it's wrong to tell someone who claims they have ME that they may not. My question is the other way round: why say in the first place that someone has ME when they have a mould intolerance treated by mould avoidance?

I don't see what on earth is unfair or unkind in saying to someone: your illness sounds awful, but mould intolerance is mould intolerance. ME is ME. Why is that in any sense a bad thing to say? Why does anyone want to conflate the two? Why should anyone want to claim to have ME when they have mould intolerance?

 

[nasim marie jafry]

Fair enough, but it seems to me you're not directly answering the question. It also seems to me you keep inverting the question, saying it's wrong to tell someone who claims they have ME that they may not. My question is the other way round: why say in the first place that someone has ME when they have a mould intolerance treated by mould avoidance?

I don't see what on earth is unfair or unkind in saying to someone: your illness sounds awful, but mould intolerance is mould intolerance. ME is ME. Why is that in any sense a bad thing to say? Why does anyone want to conflate the two? Why should anyone want to claim to have ME when they have mould intolerance?

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 isn't ME.

And goes without saying that recovering our health is the goal of each and every one of us. Recovery is great for all who experience it. I suppose though I think it is almost a 'luxury' of the 'recovered' and the less severely ill/shorter term ill to entertain notions of mould hypersensitivity as being same as ME. I just don't want to live *another* 30 years of the ME narrative being distorted/disrupted by null/inappropriate research. I will be 80 by then.

I am not sure I can add any more to this debate.

 

[Esther12]

Fair enough, but it seems to me you're not directly answering the question. It also seems to me you keep inverting the question, saying it's wrong to tell someone who claims they have ME that they may not. My question is the other way round: why say in the first place that someone has ME when they have a mould intolerance treated by mould avoidance?

I don't see what on earth is unfair or unkind in saying to someone: your illness sounds awful, but mould intolerance is mould intolerance. ME is ME. Why is that in any sense a bad thing to say? Why does anyone want to conflate the two? Why should anyone want to claim to have ME when they have mould intolerance?

I think that this is complicated by the fact that we don't have any clear and easy way of distinguishing between people who suffer with 'mould intollerance' and those who have ME (which could also be a label that gets split apart with different sub-groups as research progresses).

If someone has recovered following mould avoidance, and then goes to seek a diagnosis of ME, surely their lack of symptoms will mean that they will not fulfil any criteria for ME?

To me, your question seems abstracted from the reality that we face in a way that makes it impossible to give a simple answer.

We don't know exactly what 'ME' is, or what 'mould intollerance' is, so I'm really wary of making assertions about the labels that should be applied to other people and telling them that they and their doctors are wrong. I'm sure we've all seen examples of other people doing this to people who have been diagnosed with ME and if they do not have really good evidence to support their claims then it often does leave a bad taste.

 

[JohntheJack]

I think that this is complicated by the fact that we don't have any clear and easy way of distinguishing between people who suffer with 'mould intollerance' and those who have ME (which could also be a label that gets split apart with different sub-groups as research progresses).

If someone has recovered following mould avoidance, and then goes to seek a diagnosis of ME, surely their lack of symptoms will mean that they will not fulfil any criteria for ME?

To me, your question seems abstracted from the reality that we face in a way that makes it impossible to give a simple answer.

We don't know exactly what 'ME' is, or what 'mould intollerance' is, so I'm really wary of making assertions about the labels that should be applied to other people and telling them that they and their doctors are wrong. I'm sure we've all seen examples of other people doing this to people who have been diagnosed with ME and if they do not have really good evidence to support their claims then it often does leave a bad taste.

But all those arguments are used for psychological CF. So why not include that?

Why should someone no longer ill (having recovered by mould avoidance) want any kind of diagnosis at all?

What is abstract about someone who has mould intolerance which is treated by mould avoidance?

Again, you have inverted the question, saying why someone should be told they don't have ME. My question is why they should be told they have ME.

You don't say what is wrong in telling someone that mould intolerance is mould intolerance. Or why anyone would want to conflate MI with ME or why anyone would want to claim to have ME when they have MI.

 

[Esther12]

But all those arguments are used for psychological CF. So why not include that?

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.

Why should someone no longer ill (having recovered by mould avoidance) want any kind of diagnosis at all?[

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.

What is abstract about someone who has mould intolerance which is treated by mould avoidance?

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.

Again, you have inverted the question, saying why someone should be told they don't have ME. My question is why they should be told they have ME.

Because they fulfil the criteria for ME.

You don't say what is wrong in telling someone that mould intolerance is mould intolerance. Or why anyone would want to conflate MI with ME or why anyone would want to claim to have ME when they have MI.

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.

 

[nasim marie jafry]

If someone has recovered following mould avoidance, and then goes to seek a diagnosis of ME, surely their lack of symptoms will mean that they will not fulfil any criteria for 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?

 

[Esther12]

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?

It might, but when we have so little worthwhile evidence on 'mould hypersensitivity' or how it may relate to ME the patient and their doctors may think that the diagnosis of ME was still appropriate.