Families with multiple members with ME/CFS wanted for Moreau study - worldwide

[Sasha]

Mentioned by Dr Alain Moreau in his webinar this evening - I think people can be from any country. I imagine the contact details are as in this post about his twin study.

 

[Inara]

Thank you, @Sasha. He also mentioned genetic studies with big families, if I remember and understood correctly.

 

[Sasha]

Thank you, @Sasha. He also mentioned genetic studies with big families, if I remember and understood correctly.

Do you think it's only for large families? Wondering if I should edit my title!

 

[Inara]

No no. He mentioned twin studies. Later he mentioned big families (there was a slide with a family tree, where red meant "with ME" and blue "without ME"). If I understood correctly these were different topics. Is that wrong?

 

[Sasha]

No no. He mentioned twin studies. Later he mentioned big families (there was a slide with a family tree, where red meant "with ME" and blue "without ME"). If I understood correctly these were different topics. Is that wrong?

I think you're right that they're two separate studies, but I wondered if he only wanted big families for the 'family' study (as opposed to the twin study). His lab doesn't seem to have a website of its own with this kind of thing on it.

 

[Perrier]

Mentioned by Dr Alain Moreau in his webinar this evening - I think people can be from any country. I imagine the contact details are as in this post about his twin study.

Where was his webinar?

 

[Sasha]

Where was his webinar?

Thread here: https://www.s4me.info/index.php?thr...-to-decipher-me-cfs-enigma-dec-5th-2017.1358/

I don't know if a recording will be posted.

 

[Alvin]

@Liv aka Mrs Sowester comes to mind

 

[Liv aka Mrs Sowester]

@Liv aka Mrs Sowester comes to mind

I didn't watch it, I'm UK based but sure that I could provide blood and other family members would too...

 

[Inara]

@Sasha
I meant "many generation" families, sorry for this misunderstanding. You are right, they don't have to be big. I understood that he is interested in whether and how ME might be inherited, e.g. from parents to children, to their children and so on.

 

[Sasha]

@Sasha
I meant "many generation" families, sorry for this misunderstanding. You are right, they don't have to be big. I understood that he is interested in whether and how ME might be inherited, e.g. from parents to children, to their children and so on.

Oh! I see. The misunderstanding was mine there! )

Thanks - that's a very useful clarification.

I'm surprised not to see this study and the twins one pushed more widely. The limiting factor is surely going to be getting enough participants, and quickly enough.

 

[Justy]

I didn't watch it, I'm UK based but sure that I could provide blood and other family members would too...

Do you have multiple family members affected? I do too.

My birth mother (even better for research as i didnt grow up with her) has M.E, a maternal cousin i have never met, one of my 4 children has been ill and another one shows tendencies.

 

[Liv aka Mrs Sowester]

Yes, me, my mum, my daughter and my paternal uncle.

 

[Inara]

@Sasha, did I understand him correctly, do you think?

 

[Sasha]

@Sasha, did I understand him correctly, do you think?

I don't know. It would be good if he put out a direct call for participants, with a bit more info, really!

 

[Inara]

Shall I write him and ask to clarify?

 

[Sasha]

Shall I write him and ask to clarify?

If you'd like to - it would be good to help him get more participants for his study.

 

[Liv aka Mrs Sowester]

I emailed Alison Rae at Action CIND, she's forwarding my message to Dr Moreau. When I hear from him I will share contact details.

 

[Justy]

Yes, me, my mum, my daughter and my paternal uncle.

Im sorry to hear that - sounds like we are similar. Would be interesting to have a chat by PM about our illness and swap notes.