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Do MEs cause CFS?

Leopardtail

Senior Member
Messages
1,151
Location
England
I'm not sure which of the MEs this falls into, but I watched a presentation by Fluge. He said that one part of the M.E patients had a lot of regular infections, while the other part had practically none at all. Those who experienced a full recovery after Rituximab, got their regular infection cycle back after treatment. I.e, they are now back to their normal cycle of flu, cold, fever and other infections. I have been ill for 4 years now, but I havent had fever one time. Usually I had fever at least once a year. Maybe my immune system is overactive, while others are not?
That's interesting Deleder, I did get infections and improve (short term) with anti-biotics but did not fever and still don't.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Interestingly, some autism patients experience improvement of their symptoms during fever ! http://www.sciencedaily.com/releases/2009/04/090401145312.htm

Shame they didn't mention whether autistic children/people generally have normal body temperature or not. It would be interesting to know whether they commonly have low body temperature, as do most of us. There seem to be many common factors between autism and ME, even including an apparently-high level of Asperger's and borderline-Asperger's amongst us. Or is it just that Aspies are drawn to online forums...?
 
Messages
40
Dear Professor Edwards

I was lucky enough to see Professor Pinching and he described my ME as an over active immune system caused by contracting an enterovirus cosackie b virus. I don't know whether he used this description with all patients, but my main symptoms are overwhelming fatigue and enlarged lymph nodes. He said that when a virus hits, your immune system switches on, but then doesn’t switch off for people with ME.

Does this over active immune system fit with your understanding of a sub set of ME patients? And would rituximab offer a potential treatment for this sub set?

Regards
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Dear Professor Edwards

I was lucky enough to see Professor Pinching and he described my ME as an over active immune system caused by contracting an enterovirus cosackie b virus. I don't know whether he used this description with all patients, but my main symptoms are overwhelming fatigue and enlarged lymph nodes. He said that when a virus hits, your immune system switches on, but then doesn’t switch off for people with ME.

Does this over active immune system fit with your understanding of a sub set of ME patients? And would rituximab offer a potential treatment for this sub set?

Regards

Yes, it does, but maybe in more than one way. The question is why the immune system fails to switch off for those with ME. My thought is that the immune system gets 'reset' to an inappropriate overresponsiveness. My guess is that the most likely reason for re-setting is the generation of an autoantibody that feeds back on the system in a way it should not. So this for me is likely to come under what I call ME5. However, there is a question about whether the virus that produces the first symptoms is the chicken or the egg. If the immune system was already reset that might be the cause of initial severe symptoms. I also think that some viruses may have a particular ability to reset the immune system maybe without autoimmunity. EBV obviously comes to mind and coxsackie viruses also have a reputation for doing odd things. In these cases the reason for progressing to ME might perhaps be genetic. In other words I think the answer is yes but it may be several different types of yes.

Rituximab would be appropriate if resetting of the immune system was driven by autoantibody - which for me would be ME5 and also ME1 and ME4 but not ME2. (Viruses could fit in with ME1 and ME4 as well.) Otherwise I am not sure it is relevant, except that it might also be relevant to an EBV+genetic mechanism since it can clear EBV, which is unusual in living in B cells.

That's my current guess, and it's only a guess.
 

voner

Senior Member
Messages
592
I ran across a very nice PowerPoint slide document written/presented in the spring of 2014 by Dr. Lucinda Bateman Research at the "offer" website, titled, "Insights on ME/CFS and FM after the IACFS Conference". It's written for a lay audience. After the first few slides/pages she gets into a discussion of the factors that point towards autoimmunity as a causative factor of ME/CFS. She also discusses neuro inflammation in the brain and the autonomic nervous system's in relation to ME/CFS and FM...

I learned more than a few new tidbits. In the autoimmunity discussion she cites a couple studies that were done on twins and ME/CFS. Here is the twin information she cites:

Twin studies:

  •  Buckwald 2001: In 146 female twin pairs the concordance rate (both twins have CFS) was 55% in monozygotic and 19% in dizygotic twins (p =.042).
  •  In 74 sets of female identical FM twins, the concordance rate was 34% . In 23 sets of fraternal FM twins, only 4% of both had FM.
My knowledge of autoimmunity is lacking compared to many other people on this participating in this thread. I'm hoping some other people will peruse the slides in this document and comment on the autoimmunity slides.

Here is the document:

http://www.offerutah.org/OFFER Insights on MECFS FM final.pdf
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I ran across a very nice PowerPoint slide document written/presented in the spring of 2014 by Dr. Lucinda Bateman Research at the "offer" website, titled, "Insights on ME/CFS and FM after the IACFS Conference". It's written for a lay audience. After the first few slides/pages she gets into a discussion of the factors that point towards autoimmunity as a causative factor of ME/CFS. She also discusses neuro inflammation in the brain and the autonomic nervous system's in relation to ME/CFS and FM...

I learned more than a few new tidbits. In the autoimmunity discussion she cites a couple studies that were done on twins and ME/CFS. ...

This is brilliant, Voner. I will go through it in detail. The twin studies are really interesting, but interpretation is complicated. One important thing would be how old they were. If high monozygotic twin rates are due to genetics you would tend to expect the disease to present early if autoimmune - childhood or teens or at least by 25.

What strikes me immediately is that she flags up thyroid disease early on.

I would be seriously interested to know how many people on PR have either thyroid dysfunction, or more importantly, thyroid autoantibodies. If it has not been done, could we do a poll? It would not be proper epidemiology but it would still be worth it I think. One could of course argue (I am not being too serious here) that people on PR are self-selected TIF-PWME (thyroid internet freaks with ME) but I don't believe that. I presume that there is a known list of people on PR as of 26/08/2014 (we should not allow people to join after that and vote because that could indeed lead to bias). I am going to guess that 35% have thyroid issues.

I don't know how we do that but may be someone can say if it is feasible and within the rules.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I went through the slides. She gives a pretty exhaustive review of evidence pointing to autoimmunity. I would personally be a bit more selective and worry a bit less about triggers but there is lots of useful information there. I was pleased to see that there are data on HLA genetics being repeated (Stanford?).
 

Leopardtail

Senior Member
Messages
1,151
Location
England
This is brilliant, Voner. I will go through it in detail. The twin studies are really interesting, but interpretation is complicated. One important thing would be how old they were. If high monozygotic twin rates are due to genetics you would tend to expect the disease to present early if autoimmune - childhood or teens or at least by 25.

What strikes me immediately is that she flags up thyroid disease early on.

I would be seriously interested to know how many people on PR have either thyroid dysfunction, or more importantly, thyroid autoantibodies. If it has not been done, could we do a poll? It would not be proper epidemiology but it would still be worth it I think. One could of course argue (I am not being too serious here) that people on PR are self-selected TIF-PWME (thyroid internet freaks with ME) but I don't believe that. I presume that there is a known list of people on PR as of 26/08/2014 (we should not allow people to join after that and vote because that could indeed lead to bias). I am going to guess that 35% have thyroid issues.

I don't know how we do that but may be someone can say if it is feasible and within the rules.
I was equally impressed by the thoroughness of the paper.

Thyroid issues are hard to diagnose due to the secretary (as opposed secretory) actions of the pituitary gland make gaining a true picture an issue. Essentially it's much easier to rule in than rule out. I will be very interesting to read the references and see how the diagnosis was made. The other issue is that different countries have markedly different thresholds for what is (not) hypothyroid - e.g. what is 'sub-clinical' in Britain may be 'clinical' in Holland. This can be done, but we will have to 'work smart' if we want more than personal opinion of respondants.

The data gathering project being discussed in another thread is likely to deliver a much better answer than 'a poll'. Where the 'thyroid' aspect could be accelerated is a highly interesting question.

From personal experience I have low antibody levels, and needed to do TSH + Free T3 + Free T4 + Prolactin + SHBG to gain a proper picture.
 
Last edited:

Sasha

Fine, thank you
Messages
17,863
Location
UK
I would be seriously interested to know how many people on PR have either thyroid dysfunction, or more importantly, thyroid autoantibodies. If it has not been done, could we do a poll? It would not be proper epidemiology but it would still be worth it I think.[...] I presume that there is a known list of people on PR as of 26/08/2014 (we should not allow people to join after that and vote because that could indeed lead to bias). I am going to guess that 35% have thyroid issues.

I don't know how we do that but may be someone can say if it is feasible and within the rules.

It's easy for anyone to set up an automated poll on PR and certainly within the rules but harder to do it in a meaningful way. I think PR has several thousand members but it's hard to know which are active: I suspect some people wander off forever without deregistering and that a lot of people only pop in now and again. There's also an issue of people simply not noticing a poll thread, and then of simply not bothering to respond even if they see it.

A more effective way to do a poll might be to choose a sample size and actively approach a random sample of recently active people and invite them to take part in the poll.

PR polls unfortunately only allow you to ask a single question (though with as many response choices as you want), which makes it difficult to collect data on more than one variable. Here's an example:

http://forums.phoenixrising.me/index.php?threads/poll-what-mthfr-mutations-do-you-have.31879/

Another possibility is simply to list your questions at the start of a normal thread and invite people to respond to them in a post (but someone would then have the job of extracting the data). It's possible to set up a private thread, visible only to invited people, if there's any concern that people might want their responses private (not everyone posts here under a pseudonym).
 

Leopardtail

Senior Member
Messages
1,151
Location
England
It's easy for anyone to set up an automated poll on PR and certainly within the rules but harder to do it in a meaningful way. I think PR has several thousand members but it's hard to know which are active: I suspect some people wander off forever without deregistering and that a lot of people only pop in now and again. There's also an issue of people simply not noticing a poll thread, and then of simply not bothering to respond even if they see it.

A more effective way to do a poll might be to actively approach a random sample of a specified number of recently active people and invite them to take part in the poll.

PR polls unfortunately only allow you to ask a single question (though with as many response choices as you want), which makes it difficult to collect data on more than one variable. Here's an example:

http://forums.phoenixrising.me/index.php?threads/poll-what-mthfr-mutations-do-you-have.31879/

Another possibility is simply to list your questions at the start of a normal thread and invite people to respond to them in a post (but someone would then have the job of extracting the data). It's possible to set up a private thread, visible only to invited people, if there's any concern that people might want their responses private (not everyone posts here under a pseudonym).
I have an idea how we can do this. I have a very busy two weeks coming up, but might be able begin action the week starting 7 Sept.
 

A.B.

Senior Member
Messages
3,780
I'm sure the moderators / administrators can display an invitation to participate in a poll. Either on the front page, or through a PM to all (recently active) members.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
This is brilliant, Voner. I will go through it in detail. The twin studies are really interesting, but interpretation is complicated. One important thing would be how old they were. If high monozygotic twin rates are due to genetics you would tend to expect the disease to present early if autoimmune - childhood or teens or at least by 25.

What strikes me immediately is that she flags up thyroid disease early on.

I would be seriously interested to know how many people on PR have either thyroid dysfunction, or more importantly, thyroid autoantibodies. If it has not been done, could we do a poll? It would not be proper epidemiology but it would still be worth it I think. One could of course argue (I am not being too serious here) that people on PR are self-selected TIF-PWME (thyroid internet freaks with ME) but I don't believe that. I presume that there is a known list of people on PR as of 26/08/2014 (we should not allow people to join after that and vote because that could indeed lead to bias). I am going to guess that 35% have thyroid issues.

I don't know how we do that but may be someone can say if it is feasible and within the rules.

@Mark, just wanted to draw your attention to this and the subsequent posts.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
@Jonathan Edwards, @Leopardtail - I see that Survey Monkey have a basic poll of up to ten questions and 100 responses that's free:

https://www.surveymonkey.com/pricing/?ut_source=header
That was one of two things I had in mind as a 'quick fix' but not the best long term option. I need to check with both Mark and them, to ensure data protection is adequate for this type of information, and compliance with the law.

Their data protection may also not comply with Phoenix standards - they protect your data like a Tiger protects its cubs.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
BTW, I think you'll need a filter question to ensure that people completing the survey actually have ME, and have it according to an adequate definition such as the CCC. PR attracts a lot of people with other health issues so some proportion know they don't have ME; and some will have been misdiagnosed with it.