Do MEs cause CFS?

[Helen]

Rich Van Konynenburg about hypothyroidism related to his hypothesis:
http://iaomt.media.fnf.nu/networks/iaomt/IAOMT_talks_Rich_Van_K._2011__Part_1R.pdf
Slide/page 59-61

The slides are from his seminar 2011. Rich told it should be possible to read his slides as the complete talk "the day that I am dead and gone". Who could believe that would be one year later. Too sad.
The video recorded seminar
http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/

 

[Valentijn]

If the poll were started in a new thread in a "Members Only" section, it wouldn't be visible to lurkers who aren't members, which would probably minimize the amount of people signing up just to answer it. Though generally, I don't think we get much (or any) interference from non-members with polls.

 

[Leopardtail]

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.

Agree in principle that we need to verify actual ME - would like to see what everybody thinks is the best solution.

 

[Leopardtail]

Rich Van Konynenburg about hypothyroidism related to his hypothesis:
http://iaomt.media.fnf.nu/networks/iaomt/IAOMT_talks_Rich_Van_K._2011__Part_1R.pdf
Slide/page 59-61

The slides are from his seminar 2011. Rich told it should be possible to read his slides as the complete talk "the day that I am dead and gone". Who could believe that would be one year later. Too sad.
The video recorded seminar
http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/

So what data would we need to collect?

• TSH
• T4 (free)
• T3 (free)
• TPO antibodies
• TRA antibodies
• Prolactin?
• SHBG?

How would we account for US vs European/British units?

 

[MeSci]

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.

The NHS appears to use SurveyMonkey a lot, so I hope that their data protection is good.

 

[Leopardtail]

If the poll were started in a new thread in a "Members Only" section, it wouldn't be visible to lurkers who aren't members, which would probably minimize the amount of people signing up just to answer it. Though generally, I don't think we get much (or any) interference from non-members with polls.

I wonder whether we could construct a question (or two) on post exertional (malaise | fatigue ) that might prove a useful filter for poor diagnosis?

 

[Sasha]

If the poll were started in a new thread in a "Members Only" section, it wouldn't be visible to lurkers who aren't members, which would probably minimize the amount of people signing up just to answer it. Though generally, I don't think we get much (or any) interference from non-members with polls.

I think that for the poll to have any validity, we can't just announce it on the forum, let people self-select and hope for the best - we need to know exactly how many people are in the sample and our sample needs to be unbiased (i.e. unaffected by interest in the topic of thyroid issues). If we just announce it, we have no idea how many people will have seen it or to what extent people are self-selecting.

I think the best approach would be to decide what sample size we want, list who has been active on the forums in the past week (preferably people who have been members for at least 6 months so that we can have some confidence that they visit fairly regularly, and take a random sample of the size we want and PM them to invite them to take the poll so that they know it's going on and know it's important.

 

[Sasha]

So what data would we need to collect?

• TSH
• T4 (free)
• T3 (free)
• TPO antibodies
• TRA antibodies
• Prolactin?
• SHBG?

How would we account for US vs European/British units?

We'll have to be sure to have a "don't know" option for all of this - many people may never have been tested for thyroid issues, or not thoroughly. And it will be important to tell people that it's important that they tell us that they don't know their test results, or that they don't have ME, rather than simply not responding.

 

[Leopardtail]

We'll have to be sure to have a "don't know" option for all of this - many people may never have been tested for thyroid issues, or not thoroughly. And it will be important to tell people that it's important that they tell us that they don't know their test results, or that they don't have ME, rather than simply not responding.

yes I had anticipated that one
we will need an 'untested' indicator

 

[Leopardtail]

I think that for the poll to have any validity, we can't just announce it on the forum, let people self-select and hope for the best - we need to know exactly how many people are in the sample and our sample needs to be unbiased (i.e. unaffected by interest in the topic of thyroid issues). If we just announce it, we have no idea how many people will have seen it or to what extent people are self-selecting.

I think the best approach would be to decide what sample size we want, list who has been active on the forums in the past week (preferably people who have been members for at least 6 months so that we can have some confidence that they visit fairly regularly, and take a random sample of the size we want and PM them to invite them to take the poll so that they know it's going on and know it's important.

To know the proportion who have hypo- hyper- eu- thyroidism they have to have been tested. No test is no indication of being euthyoid. We will need to filter somehow....

 

[Jonathan Edwards]

I think that for the poll to have any validity, we can't just announce it on the forum, let people self-select and hope for the best - we need to know exactly how many people are in the sample and our sample needs to be unbiased (i.e. unaffected by interest in the topic of thyroid issues). If we just announce it, we have no idea how many people will have seen it or to what extent people are self-selecting.

I think the best approach would be to decide what sample size we want, list who has been active on the forums in the past week (preferably people who have been members for at least 6 months so that we can have some confidence that they visit fairly regularly, and take a random sample of the size we want and PM them to invite them to take the poll so that they know it's going on and know it's important.

Exactly what I thought Sasha. So, I have discovered this morning that almost exactly 100 people post regularly. I have excluded two people who probably posted just recently in response to my inventing 'ME4' in this thread (both would be yes, but the idea is to get the right answer, not the one we want).

My question would be a very simple one because this is intended just as a raw look see and if a look see gets complicated it bellyflops. I think it is:

'Are you aware that you have a diagnosis of CFS/ME and have had blood tests that either show thyroid autoantibodies or an under- or over- active thyroid based on T3, T4 or TSH levels?'

On this basis I already know of 4 yes answers. I am fairly sure there are more, although I have no idea how many. Up to 10 would be fairly unremarkable. 10-20 would suggest there may be something to it. More than 20 would be pretty impressive.

The question then would be how to get answers from the 100 posters without causing any offence or concern. I have the list of names - which is hardly confidential since it is just the people who have posted recently. I could post that on this thread or a new one. How people wanted to answer could be optional. I can of course take answers as 'Conversations'. I have not thought through all the issues but I have a feeling it is probably about as simple as that. If a lot of people simply don't think they have ever been tested for either then it would be useful to know that if yes responses are unremarkable. To begin with it might just be interesting to know how many people would answer yes.

 

[Jonathan Edwards]

And yes, whether or not a 100 look see shot comes out with an interesting answer I think a more detailed analysis of a larger sample would be worthwhile, Leopardtail.

 

[A.B.]

The question then would be how to get answers from the 100 posters without causing any offence or concern. I have the list of names - which is hardly confidential since it is just the people who have posted recently. I could post that on this thread or a new one.

A new thread is probably better.

 

[Jonathan Edwards]

Can I do that, or does it need a moderator? I guess a members only would be sensible, as Valentijn suggested?

 

[alex3619]

I don't think you can have a conversation with that many people. It might take 100 conversations. A thread in the members only section might be better. In my case most of my investigations were so long ago that I do not recall answers, only that nobody seemed concerned about thyroid issues ... but that could be simply from lack of evidence, not evidence that there is no problem. I do however seem to have a high need for iodine using an iodine uptake test.

 

[Sidereal]

Can I do that, or does it need a moderator? I guess a members only would be sensible, as Valentijn suggested?

Any member can start a new thread. Here is the link to the members only section of the forum:

http://forums.phoenixrising.me/index.php?forums/members-only-me-cfs-discussion.78/

You can post a new thread by using the blue button in the top right hand corner of the page "Post New Thread".

If you wish only your pre-selected 100 members to answer the thyroid question, perhaps you can state so in your first post or you could tag them all so they would be alerted to the existence of the thread. You can do so using the @ sign, like this: @Jonathan Edwards

Tagging 100 people would take some time/effort, though.

 

[Marco]

Lucinda Bateman's slides did include this :

TSH---could cause low thyroid function without clear lab tests
(>30% of CFS have hypothyroidism)

Source not given.

 

[Sasha]

My question would be a very simple one because this is intended just as a raw look see and if a look see gets complicated it bellyflops. I think it is:

'Are you aware that you have a diagnosis of CFS/ME and have had blood tests that either show thyroid autoantibodies or an under- or over- active thyroid based on T3, T4 or TSH levels?'

I think that's a problematic phrasing in that you need the answer to two separate questions: (1) have you a diagnosis of ME and (2) have you had blood tests that either show thyroid autoantibodies or an under- or over- active thyroid based on T3, T4 or TSH levels. The rate you're looking for is the number of yes answers to (2) divided by the number of yes answers to (1).

I understand that if you get a lot of yesses to your question it's indirectly indicative of a high rate but I think there's a big risk of a falsely low rate if we have a lot of people who know they don't have ME and/or haven't had thryoid antibody tests (or don't know if that's the test they've had).

 

[Jonathan Edwards]

Thanks Sidereal, I will try to set up a new thread for members. I will not post names yet to give people time to say they are unhappy. It seems I have a 'don't know' from Alex who unsurprisingly was on the list!

 

[Jonathan Edwards]

I think that's a problematic phrasing in that you need the answer to two separate questions: (1) have you a diagnosis of ME and (2) have you had blood tests that either show thyroid autoantibodies or an under- or over- active thyroid based on T3, T4 or TSH levels. The rate you're looking for is the number of yes answers to (2) divided by the number of yes answers to (1).

I understand that if you get a lot of yesses to your question it's indirectly indicative of a high rate but I think there's a big risk of a falsely low rate if we have a lot of people who know they don't have ME and/or haven't had thryoid antibody tests (or don't know if that's the test they've had).

It is actually one question in the strict rules of logic. I could put a 'both' in to make it clear. An answer yes has to mean a yes to both. But I am thinking we are not going to go for a technical poll anyway. If there is a thread we just get answers and if these are ambiguous I can say so? On a thread all people have to do is click reply and put yes or something more complicated if needed. I am pretty sure all the people I have picked are sure they have CFS. That is good enough for me because if there are several sorts of ME there will be no 'correct' definition of CFS other than being ill enough with fairly typical problems to take the trouble to join PR. In other words, if people on PR are people whose illnesses need sorting out then those are the ones I am interested in.