Any twins with ME? Research Opportunity

[Old Bones]

From Margaret Parlor, National ME/FM Action Network:

Note: You do not need to be a Canadian to participate in this research.


"A senior Canadian researcher has been looking for genetic factors in people with ME/CFS for several years. His studies have already yielded promising results. The next stage of his study involves looking at identical twins where both twins have ME/CFS (“concordant”) or one of the twins has ME/CFS and the other does not (“discordant”). He has already found three sets of identical twins for his study but hopes to find more.

If you are identical twins with discordant or concordant ME/CFS, please contact me at mefminfo@mefmaction.com to learn more about the study and what it would involve from you.

I am interested in hearing from identical twins affected by ME/CFS anywhere in the world. There are two reasons.

· Firstly, while this researcher hopes to find enough cases in countries where he has collaborators (Canada, the US and New Zealand), he might need additional cases and might be able to work out suitable arrangements for twins in other locations to participate as well.

· Secondly, I suspect that other researchers will want to do twin studies. This will give us an indication of how easy or difficult it is to find volunteers and a list of possible volunteers. Please note that if a researcher asks me for names of twins, I will notify you about the study and ask you for permission to share your names; I will not give your names to researchers without notifying you and receiving your permission.

**

Please share this request widely. And if you know identical twins in this situation, please encourage them to contact me. Thank you!

Margaret

Margaret Parlor

President, National ME/FM Action Network

mefminfo@mefmaction.com "

 

[Cheesus]

I have a friend with ME who is an identical twin. Her twin does not have ME. I will forward this onto her.

 

[Cheesus]

You may want to change the format of that email address to something like

mefminfo at mefmaction dot com

Otherwise it will be swamped by internet spam.

 

[*GG*]

Is there a link so I can post this on Facebook?

GG

 

[Old Bones]

Is there a link so I can post this on Facebook?

GG

Here's a link:

https://www.facebook.com/MEFMActionNetwork/

 

[Valentijn]

Does the mysterious senior researcher have a name? I wouldn't advertise or get involved with any ME research unless I could take a look at their past work.

 

[shannah]

Does the mysterious senior researcher have a name? I wouldn't advertise or get involved with any ME research unless I could take a look at their past work.

Good point @Valentijn

Who is the researcher? Why so secretive?

 

[Cheesus]

Does the mysterious senior researcher have a name? I wouldn't advertise or get involved with any ME research unless I could take a look at their past work.

The researcher in question is Dr Alain Moreau.

 

[Cheesus]

And here is a lay description of the research:

I am not a scientist, but my simple understanding of the study is as follows: His area of interest is stress-activated microRNAs. RNA is of course genetic material which is created from your DNA. You of course have the same DNA as your twin. Dr Moreau would like to test if your twin's genetic response to stress as reflect in RNA and more specifically microRNA is different from yours. Because you start with the same DNA, the RNA and microRNA should simplistically be the same, so any differences that are found become very interesting. And he is speculating that there are indeed differences and that these differences are leading to the ME/CFS symptoms. By identifying the different microRNAs, he and others might be able to track down exactly what is happening biochemically.

What he is looking for are 4 blood samples from each twin, the first one taken at the start and then 30, 60 and 90 minutes after inducing stress (I believe that it is a vibrating cuff on your arm - relatively well tolerated by ME/CFS patients). He would need about 2 hours of your time and your twin's time, to review the procedure, sign the consent forms, and carry out the procedure.

 

[gdbennett]

If they decide to study siblings that have ME, my sister and I both have it.

 

[Dechi]

Dr Moreau is new to ME. He started doing research just recently. He is not a specialist. But we are still appreciative of the fact that he is trying to help us. He is in Montreal, Quebec.

 

[shannah]

Haven't similar twin studies already been done?

 

[RYO]

@Rose49
I am curious whether Dr Davis has explored investigating genetic profile of ME/CFS patients. I would guess ME/CFS phenotype may be affected by multiple genes. Many of us have undergone WES. Are any researchers maintaining genetic database of patients suffering from ME/CFS?

 

[Silence]

I am an Identical twin, and both my twin and I have CFS/ME, but also ehlers danlos syndrome. I wonder how many twins are on this forum? Any other twins out there?