ME is not mould intolerance; mould intolerance is not ME

[Esther12]

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?

I'm saying that, while I think it's unlikely mould intolerance plays any significant role in causing the ill-health of those with ME, we cannot be certain that it is not the primary cause of ill health for those with ME.

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

I don't know what points you think I'm failing to address. Claiming to know that mould avoidance does not treat ME is not the same as presenting any evidence to show that mould avoidance dos not treat ME. What other treatments can we so confidently assert do not treat ME?

It's not about criteria.

If you're saying that ME is defined in such a way that someone who recovered following mould avoidance cannot be said to have had ME, surely it is about exactly how 'ME' is defined.

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.

You responded to my suggestion that you share your evidence with Julie with this. I thought that you were talking about Julie. Sorry if I misunderstood you.

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.

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.

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

How do you determine what a possible treatments for ME, and what are treatment which, if successful, show that the patient never had ME?

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

I'm a committed splitter.I think it's good to have categories for ill-health that are as small and precise as can be meaningfully managed. I just also think that it's best to try to be cautious in the claims we make about other people's health, and to try not to go beyond the evidence.

 

[JohntheJack]

I'm saying that, while I think it's unlikely mould intolerance plays any significant role in causing the ill-health of those with ME, we cannot be certain that it is not the primary cause of ill health for those with ME.



I don't know what points you think I'm failing to address. Claiming to know that mould avoidance does not treat ME is not the same as presenting any evidence to show that mould avoidance dos not treat ME. What other treatments can we so confidently assert do not treat ME?




If you're saying that ME is defined in such a way that someone who recovered following mould avoidance cannot be said to have had ME, surely it is about exactly how 'ME' is defined.



You responded to my suggestion that you share your evidence with Julie with this. I thought that you were talking about Julie. Sorry if I misunderstood you.






How do you determine what a possible treatments for ME, and what are treatment which, if successful, show that the patient never had ME?



I'm a committed splitter.I think it's good to have categories for ill-health that are as small and precise as can be meaningfully managed. I just also think that it's best to try to be cautious in the claims we make about other people's health, and to try not to go beyond the evidence.

Unless you're saying ME and mould intolerance are synonymous then my point stands.
In any case, that is simply not true. There has been decades of work showing the link between viruses and ME. There is nothing to link mould intolerance with ME.
There needs to be reasonable uncertainty. I can't say for certain there isn't a tiger in my kitchen as I write or that in fact our lives are governed by the stars. But it's absurd to suggest that either is true. It is beyond reasonable doubt that ME and mould intolerance are not the same thing.

If you're saying it's possible mould intolerance is ME and ME is mould intolerance, then the logical end is that those millions of us whose illness is linked to viruses do not have ME but that people who have mould intolerance treated by mould avoidance do. I don't understand how anyone could defend such a position

Criteria and definition are not the same thing. All criteria are agreed: symptoms not otherwise explained.

As I said before, and it's easily verifiable if you look through the thread, the only time I ever mentioned Julie was in response to Nasim and that was about how people are seemingly unprepared to challenge mould intolerance as ME simply because of Julie's involvement. As far as I am concerned, this is not about Julie.

As I keep saying, this is not about treatment but about explaining the symptoms.

You say you're a committed splitter but in this thread you have supported positions which would expand ME to include psychological CF and you are prepared to include people whose symptoms are simply due to mould intolerance. That doesn't seem to me to be the position of a splitter.

We've said before we're going round in circles and I think we are again. I don't think there is much to be gained by continuing the thread. Your apparent willingness to redefine ME and seeming preparedness to expand the definition as to make it virtually meaningless suggest to me that we're never going to agree.

 

[Esther12]

If you're saying it's possible mould intolerance is ME and ME is mould intolerance, then the logical end is that those millions of us whose illness is linked to viruses do not have ME but that people who have mould intolerance treated by mould avoidance do. I don't understand how anyone could defend such a position

I don't think that's right, as it could be that, for example, viral infections can lead to some people having problems with mould intollerance. Again, I don't think that this is remotely likely, but I think it is less implausible than that our lives are governed by the stars.

You say you're a committed splitter but in this thread you have supported positions which would expand ME to include psychological CF and you are prepared to include people whose symptoms are simply due to mould intolerance. That doesn't seem to me to be the position of a splitter.

I don't think that we have a good enough understanding of these issues to assert that those who improve/recover while doing mould avoidance do not have ME. It might be that in time there will be a useful split there, but it also seems quite possible that 'mould intollerance' will not be a meaningful group to split off. I'm always hopeful that new research will help bring about a more meaningful understanding of the causes of people's ill-health.

We've said before we're going round in circles and I think we are again. I don't think there is much to be gained by continuing the thread. Your apparent willingness to redefine ME and seeming preparedness to expand the definition as to make it virtually meaningless suggest to me that we're never going to agree.

I'm not interested in trying to redefine ME. I don't think that any of the specific criteria we currently have to define ME are perfect, but I also think it will be hard to improve them without a better understanding of the illness. When you've not said which specific criteria you think I'm trying to change it is difficult to get into the details of your concerns here, but as you say, it does seem that we're just going in circles.

 

[JohntheJack]

I don't think that's right, as it could be that, for example, viral infections can lead to some people having problems with mould intollerance. Again, I don't think that this is remotely likely, but I think it is less implausible than that our lives are governed by the stars.



I don't think that we have a good enough understanding of these issues to assert that those who improve/recover while doing mould avoidance do not have ME. It might be that in time there will be a useful split there, but it also seems quite possible that 'mould intollerance' will not be a meaningful group to split off. I'm always hopeful that new research will help bring about a more meaningful understanding of the causes of people's ill-health.



I'm not interested in trying to redefine ME. I don't think that any of the specific criteria we currently have to define ME are perfect, but I also think it will be hard to improve them without a better understanding of the illness. When you've not said which specific criteria you think I'm trying to change it is difficult to get into the details of your concerns here, but as you say, it does seem that we're just going in circles.

You're prepared to accept the possibility that mould intolerance is ME and ME is mould intoelrance, such that everyone who has mould intolerance has ME and anyone who doesn't have mould intolerance doesn't have ME. I find that bewildering and so, as I say, we're too far apart ever to agree.

 

[Dufresne]

Interesting, Ryan said his onset was sudden and flu-like

Joey Tuan also suffered an acute/viral onset. And his diagnosis was confirmed by Dr Peterson, who apparently does not work with gradual onset patients. Yet extreme mold avoidance has greatly helped Joey. Moreover he's also tested positive for Lyme. There can be many factors influencing your disease, and the bug that pushed you over the edge may be less important, or even irrelevant, at this point.

Anecdotally, rigorous avoidance of suspected mold toxins helps the majority of those diagnosed with ME/CFS, irregardless of their type of onset. As I see it, it's up there with Ampligen and Rituximab for effectiveness.

 

[Snowdrop]

A different way to approach thinking about this is with allergies.

Many people with ME have allergies and sometimes that becomes Mast Cell activation. Now MCAD is it's own illness. So, if someone with ME and allergies get treatment for allergies those symptoms come under control more but they still have ME and it's symptoms. But if the symptoms they experienced are completely relieved so that they function near normal one can be reasonably confident that the person had MCAD even if the diagnosis at the time had been ME.

I have lived in a few different countries and provinces in Canada -- so different housing and the presence of mould or not has had no effect on my health.

 

[Hip]

Anecdotally, rigorous avoidance of suspected mold toxins helps the majority of those diagnosed with ME/CFS, irregardless of their type of onset. As I see it, it's up there with Ampligen and Rituximab for effectiveness.

If mold avoidance were that effective, surely there would be more stories of ME/CFS patients improving with mold avoidance online, but when I searched the other day for such stories, I found next to nothing.

You're prepared to accept the possibility that mould intolerance is ME and ME is mould intoelrance, such that everyone who has mould intolerance has ME and anyone who doesn't have mould intolerance doesn't have ME. I find that bewildering and so, as I say, we're too far apart ever to agree.

It does not have to be as extreme as you are suggesting; there could be two situations:

Pure mold patients, whose only problem is mold, and who may stand a good chance of completely curing themselves once they eliminate mold from their environment (and from their nasal and sinus mucous membranes, if they have a mold infection there). These would be Shoemaker's CIRS patients, and these would be quite distinct from ME/CFS. And I agree with you that because CIRS is probably more curable, it is important not to be mislabelled with ME/CFS if you have CIRS, else you will not get the right treatment.

Virus + mold patients, who caught a virus while being exposed to mold, and the mold may have compromised or modulated immunity in such a way that it allowed the virus to trigger ME/CFS (and possibly the mold continues to compromise immunity if the patient harbors a nasal mold infection). These patients may in general not be able to completely cure themselves just by mold avoidance, but mold avoidance might help improve ME/CFS symptoms.


You cannot rule out the possibility of mold playing a causal role in ME/CFS. And indeed, Dr Joseph Brewer's 2013 paper, which found mycotoxins like ochratoxin A in 93% of ME/CFS patients, and none of the healthy controls, suggests that mold may be part of the ME/CFS picture.

 

[nasim marie jafry]

A different way to approach thinking about this is with allergies.

Many people with ME have allergies and sometimes that becomes Mast Cell activation. Now MCAD is it's own illness. So, if someone with ME and allergies get treatment for allergies those symptoms come under control more but they still have ME and it's symptoms. But if the symptoms they experienced are completely relieved so that they function near normal one can be reasonably confident that the person had MCAD even if the diagnosis at the time had been ME.

I have lived in a few different countries and provinces in Canada -- so different housing and the presence of mould or not has had no effect on my health.

Hey, Snowdrop, Just to say I agree with what you say. I think we are all a wee bit weary on this thread now, but of course all of us with ME - regardless of trigger - have immune systems in disarray. Many have developed allergies/sensitivities. I am learning more about emergence of MCAS and understand it can sometimes coexist with POTS. And of course many of us w ME also have POTS. But still we should not I think overstate the significance of mould intolerance in ME population.

I forgot to mention before that I have direct experience of sensitivities - about 15 years ago I reacted to a heavyhanded use of moth balls (napthalene has been banned by EU since 2008!) and I developed chronic sinusitis, I had a hospital sinus scan which showed chronic inflammation, but I opted not to have surgery - and nowadays I endure sinus headaches from hell. Issues with my eyes mean I can't use steroidal sprays so I am dependent on OTC medication. I banished the mothballs long ago but still have the inflammation. I cannot work out what triggers the headaches, which I have often.

I am sure my ME was implicated in the sinusitis in first place - I have had many different inflammatory processes over the years, no doubt as a result of ME. My point is if the sinusitis disappeared tomorrow I would still 100% have ME - and this sensitivity is 'insignificant' compared to the constantly disabling PEM and orthostatic intolerance and myalgia of ME that I live with. Although the sinus headaches can be brutal.

 

[Gingergrrl]

Virus + mold patients

I did not get to read this whole thread which is now seven pages but the above description is what started my illness (mono virus/EBV in early 2012, then moving into a moldy rental in late 2012, and then getting very ill and developing POTS in early 2013). Now it's all shifted into autoimmunity. Am posting this in case it adds anything to the thread... and if it doesn't, just ignore this post .

 

[Hip]

about 15 years ago I reacted to a heavyhanded use of moth balls (napthalene has been banned by EU since 2008!) and I developed chronic sinusitis, I had a hospital sinus scan which showed chronic inflammation, but I opted not to have surgery - and nowadays I endure sinus headaches from hell.

Coincidently enough, as I was reading through the Royal Free Hospital 1955 ME/CFS outbreak study the other day, I noticed they mentioned that the hospital had a "plague of clothes moths" at the time of the ME/CFS outbreak. So the first thought that came to mind was that they likely used a lot of moth balls in the hospital to combat that moth infestation, and hence presumably naphthalene would have been present in the uniforms of the hospital staff. So I wondered if naphthalene might have been a cofactor, that in combination with the virus, triggered ME/CFS.

 

[Hip]

I banished the mothballs long ago but still have the inflammation. I cannot work out what triggers the headaches, which I have often.

I posted a list of supplements here that help my viral sinusitis, which appeared after I caught my ME/CFS triggering enterovirus. Another thing that might be worth trying is nasal irrigation with warm saline, otherwise known as jala neti (in yoga).

 

[SueJohnPat]

Mold avoidance worked for me ...... While I was on sabbatical near Death Valley. I relapsed after moving back home to New Jersey. My home had some mold was remediated but I still have ups and downs.
It is exptemely difficult if you become hypersensitive to mold to " avoid" it.

I asked about mold for 2 years was told it was not mold then I said I had to try anyway just got my doctor to give me cholestyramine and went to Death Valley.

We have sold our home. Moving to an apartment . I may have to live on the road in an rv. This needless to say is extremely difficult if not impossible and overwhelming for those who are ill. I have an incredibly understanding husband and I have some money saved so I have it easier than a lot of us and it is still a very difficult road.
We are moving to an apartment . We may not be able to bring any of out belongings. I may be traveling on the road alone in an rv living outside for a year.

There are mold avoiders Facebook groups . There are thousands of preople doing this. Other diagnosis are chronic Lyme fibromymyalgia , gulf war ect. As well as cfs.

IN the summer sunny hot weather my cfs generally gets a lot better. I declined sharply in the fall.

I had 2 separate 2 day exercise studues done.Dr Betsy Keller and Dr James Baranuik. They both indicated I had
Cfs.
?????
I am doing what works for me. I am sharing because I think if you can do a sabbatical it is worth a shot.

 

[Jesse2233]

@SueJohnPat was your onset sudden (viral) or gradual?

 

[Hip]

@SueJohnPat, can I ask, how much improvement in your symptoms did mold avoidance produce? If you classify ME/CFS on the scale of mild, moderate and severe, where were you on this scale before you started mold avoidance, and where did you end up after?

 

[nasim marie jafry]

Coincidently enough, as I was reading through the Royal Free Hospital 1955 ME/CFS outbreak study the other day, I noticed they mentioned that the hospital had a "plague of clothes moths" at the time of the ME/CFS outbreak. So the first thought that came to mind was that they likely used a lot of moth balls in the hospital to combat that moth infestation, and hence presumably naphthalene would have been present in the uniforms of the hospital staff. So I wondered if naphthalene might have been a cofactor, that in combination with the virus, triggered ME/CFS.

Ah, that's interesting, Hip, have not heard this before, though my own naphthalene issues were 18 or so years after ME onset, so no connection for me with mothballs and onset of ME, for sure.

 

[SueJohnPat]

@SueJohnPat, can I ask, how much improvement in your symptoms did mold avoidance produce? If you classify ME/CFS on the scale of mild, moderate and severe, where were you on this scale before you started mold avoidance, and where did you end up after?[/QUOTE

I would say at my worst I was Moderate. I have improved although it is now very sporadic.

Last August through November . I was mild.
In August we found mold in our basement.
I shut the basement door ( we always kept the basement open because of the cat)
I started on cholystyramine. I then did a sabbatical in Tecopa CA ( next to Death Valley).
I bought all new clothes and bought nothing from home. After 2weeks I was able to hike 3 miles at Zabrinski Point with no PeM.
This is the first time in 7 years I was able to do anything like this.
I came home to NJ. At first I felt reallly well. Able to do things had vitality . This lasted 3 weeks. Husband had mold remediated.
I did react badly to a few winter coats but nothing dramatic. After about 3 weeks CFs
started creeping in.
I have slept in a tent at my fathers house ( he lives in a more rural area farther from the city). This seemed to help. I seem to have bad relapses during cool rainy weather.
We sold our home. When our porch was sAnded I became very badly neurologically impaired. I went outside And symptoms went away.
Stayed at a nearby hotel symptoms better.
My symptoms now have changed. I can get really bad cognitive bizarre issues if exposed. To " mold"
Example. My Dad's house has some mold. Can tolerate it for a few hours.
I got tired once and went in and laid my head on a pillow in the bedroom for About 20 minutes.
After I got up I felt feeling like I had to leave
Crazy like the house was on fire.
. I had trouble speaking to my father and sister barely spoke to them got in my car and drove.
It feels like I am going crazy. I pulled my car over and dumped water over my head and rinsed my face and Arms. I felt totally fine after this the crazy feeling went totally away.
This has happened at times and needless to say it is not easy to deal with. I now take several showers a day. But this seems to decrease the symptoms.
Hard to describe not physically that weak but it feels like my brain is swollen.
We have rented an apartment. I am going there tonight with new clothes and an air mattress. I am not bringing anything from my home .

 

[Dufresne]

Anecdotally, rigorous avoidance of suspected mold toxins helps the majority of those diagnosed with ME/CFS, irregardless of their type of onset. As I see it, it's up there with Ampligen and Rituximab for effectiveness.

If mold avoidance were that effective, surely there would be more stories of ME/CFS patients improving with mold avoidance online, but when I searched the other day for such stories, I found next to nothing.

I judge the potential of a treatment by the positive reports of credible people within the online community who've tried it. There are a number of sufferers on this forum who've experienced benefit from some degree of avoidance and they can chime in if they like. There are also prominent people within our community who apparently suffered CCC ME/CFS who are mostly in remission: Julie Rehmeyer, Lisa Petrison, Erik Johnson. Notice these are the people who persevered with extreme avoidance, something not many have tried due to its degree of difficulty and inconvenience. Is it any wonder there aren’t more reports online? Then there's Mike Dessin who has claimed mold avoidance was important in his recovery from severe ME/CFS. Incidentally I also believe his illness is thought to have involved an enterovirus, but I'm not sure how solid this is.

Joey Tuan, also a high profile member of our community, has blogged about his considerable success. Rachael Korinek, who teamed up with Joey in Healclick, moved down to the desert and has seen health improvement, which is an interesting coincidence. Jen Brea, also prominent in our community, is apparently enjoying a fair bit of improvement with avoidance. There's the fellow who makes the GetWellFromME videos, I think his name is Gilles, who has video-blogged positively about the 'locations effect'.

According to Lisa Petrison, greater than 90% of ME/CFS patients who've done a good trial of extreme avoidance have seen improvement. And I believe her. She seems honest about what she's observed with people.

Lisa Petrison, Erik Johnson, Julie Rehmeyer, Joey Tuan, Rachael Korinek, Jen Brea, Mr GetWellFromME (I think his name is Gilles) -forum developers, serious bloggers, science writers, and an ME/CFS documentary filmmaker and TED talk guest; the go-getters in our community that had the guts and drive to try such an odd and ascetic exercise all coincidentally report there is something significant going on here. These are testimonials I find very convincing.

Now compare that with what we’ve seen with Rituximab. You said it yourself:

On these forums, the response rate of those who posted their rituximab results has not been very good. Out of the 14 people on this forum who I saw posted their results, only 1 person had a very good response, another 1 or 2 had moderate to mild responses, and the rest did not respond.

 

[Hip]

Notice these are the people who persevered with extreme avoidance, something not many have tried due to its degree of difficulty and inconvenience. Is it any wonder there aren’t more reports online?

Mold avoidance is not that difficult if you use a dehumidifier in your home. According to Dr Myhill's advice on mold avoidance, once the humidity goes below 40%, the mold dies off. A dehumidifier to cover one room will cost around $100. So it is not an expensive or difficult treatment.

Maybe a dehumidifier is not quite as good as going to the desert, but the dehumidifier approach is far more accessible, especially for us in the UK, a country a little short on deserts.


A confounding factor with living in the desert is that you will probably get a much higher exposure to sunlight, so your vitamin D levels will go up, as will several other biochemical factors triggered by sunlight on the skin, including the following factors:

Sunlight on the skin generates:

• Cholesterol sulfate
• Endorphins
• Neuropeptide substance P
• Calcitonin gene-related peptide
• Alpha melanocyte-stimulating hormone
• Immunosuppressive effects, through upregulation of cytokines TNF-α and IL-10
• Increased activity of T regulatory cells that remove self-reactive T cells (which has anti-autoimmune effects)

More info in this post.

Interesting enough, Dr Ritchie Shoemaker's mold and biotoxin illness treatment protocol includes raising alpha melanocyte-stimulating hormone (α-MSH) by eliminating the MARCoN infections in the nose and sinuses. MARCoNs he says lower α-MSH, and he considers such low α-MSH to be part of the problem in mold and biotoxin illness. α-MSH is an anti-inflammatory hormone.

So when you go to the desert, you automatically fulfill two aspects of Shoemaker's protocol: mold avoidance, and raising α-MSH, plus you increase all the other factors in the list above.

So improvements in ME/CFS symptoms from going to the desert may not necessarily derive purely from mold avoidance.

 

[Gingergrrl]

Now compare that with what we’ve seen with Rituximab.

To me it is not an either or situation and the two are not mutually exclusive. I believe very strongly in mold avoidance after what I went through living in a prior rental with significant mold for 3 yrs. We had to move and lost close to 100% of our belongings. My immune system had reached the point that it could no longer fight the mold and was rejecting all food but water (you know the story so I won't bore you w/the rest LOL). I believe if I had continued living in that rental with that level of mold, I may have died of anaphylaxis and not be here to type this. So I support mold avoidance and worked with an excellent mold doctor in 2015 and have seen how powerful it can be.

In my own case (whether caused by mold, EBV virus, etc) I now have eleven autoantibodies and we believe that I am a good candidate for Rituximab since I had such a good response to high dose IVIG. I do not endorse trying Ritux for everyone and do not take it lightly and know it is risky. But given my entire clinical picture, I feel it is the right course of action if I can get it approved by insurance. But for others, it would not be the right course of action. I hope this makes sense and just trying to add an extra perspective why each case is so unique.

 

[ash0787]

I think I can elaborate on what might be happening here, its possible that some people are allergic to mould but in a healthy person that allergic would not be noticable unless you went somewhere with a very large amount of mould,
but when you got the me/cfs the immune system becomes hyperactive / supersensitive and even small allergy reaction that is normally not even noticable could cause large immune response throughout the body ( similar to PEM ). The mould is probably not instrumental to the pathology of the disease ...