DecodeME: Take Part in the World's Largest Genetic Study into ME

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Just bumping this thread to say that the study has now launched, you can sign up here.

There is a short online survey (approx. 30 mins) and the possibility of providing a spit sample (by post) for DNA analysis.

You can take part if you meet all the following:

  • You have a diagnosis of ME/CFS from a healthcare professional
  • You are aged 16 or over
  • You live in the UK

:)
 

bertiedog

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I completed the questionaire this afternoon and will wait to see if they need a saliva sample from me. Will be interesting because I had to show that I also had a diagnosis of adrenal insufficiency (Addisons is mentioned even though I don't think I have full blown Addisons) to which I indicated not active because it is being treated with medication plus I have a diagnosis of hypothyroidism which again I put as not active because it is being treated.

I do wonder whether they therefore might not want any further info from me.

Pam
 

BrightCandle

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My concern is that they are going to struggle to get 20,000 people given the limitations in criteria. The two headline numbers I know of in regards to ME/CFS prevalence are that about 0.2% have ME/CFS, about half of which meet the Candian Criteria and that 90% of patients are undiagnosed. When you further filter that cohort with comorbidities you potentially don't have a very large group especially since initially you are recruiting in the UK. 65,000,000 people, 0.2% of which have ME/CFS leaves 130,000. With only 10% being officially diagnosed by their doctors you only have a maximum study based on doctor diagnosed of 13,000. Then you filter off common comorbid conditions like hypothyroidism and such and well its going to be a struggle to get to 20,000.

There are a lot more Long haulers with ME/CFS but there are only maybe 30,000 with a diagnosis and its for Long Covid not for ME/CFS, so they don't meet the criteria either. I hope DecodeME has a lot better information about the real diagnosed prevalence of the condition and that in practice they have more than enough candidates. From the historically published papers its a problem or the situation has some how changed dramatically in the last year despite most people reporting the guidance hasn't changed much. I think its a bit of an ask to expect 150-200% of the available patients to participate, it necessitates going off to Europe to find participants, which will themselves be diagnosed under a different criteria to those in the UK. I also think the comorbidity filtering likely drops the vast majority of severe ME patients as well. Are the mild patients the best ones for this data? I am not sure that is a good idea.

I have issues with how the participants are being selected, if we lived in a reasonable world then it would be a less flawed criteria but I live in the one where this gross widepsread systemic prejudice as the research data shows.
 

bertiedog

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I do wonder whether they therefore might not want any further info from me
So I have had an email today to say that they will be sending me a saliva sample kit for me to take part in the study. I think it must have been ok that although I stated I had been diagnoed with hypothyroidism and also adrenal insufficiency they weren't active. I did read in the first part of the information that if your condition is being treated that was the correct thing to do but wonder if others didn't realise this was the right thing to do because I have read that many people are not being asked for their DNA.

Also I have been ill with ME etc for over 20 years and I am 74 now so maybe they would like DNA in my age group, who knows.

Pam