Leopardtail
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That's interesting Deleder, I did get infections and improve (short term) with anti-biotics but did not fever and still don't.
Do MEs cause CFS?
- Thread starter Jonathan Edwards
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lansbergen
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I wished for years to get a good fever but still no luck.
thegodofpleasure
Player in a Greek Tragedy
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Interestingly, some autism patients experience improvement of their symptoms during fever ! http://www.sciencedaily.com/releases/2009/04/090401145312.htm
MeSci
ME/CFS since 1995; activity level 6?
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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...?
Snow Leopard
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With regards to fever, I've had many infections over the years but haven't had a fever since I was young, maybe 18 years ago. Makes me wonder why not...
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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
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
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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
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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:
Here is the document:
http://www.offerutah.org/OFFER Insights on MECFS FM final.pdf
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.
Here is the document:
http://www.offerutah.org/OFFER Insights on MECFS FM final.pdf
Leopardtail
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ditto, I am trying to locate science on fever, though there does not seem to be much of it.
Jonathan Edwards
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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
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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
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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.
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A.B.
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While we're at it, also ask about decreased pituitary hormones.
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
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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.
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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.
@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
https://www.surveymonkey.com/pricing/?ut_source=header
Leopardtail
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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.
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.