Discussion in 'BioMedical ME/CFS News' started by Andy, Dec 18, 2019.
20,000 seems like an extraordinary high number. God knows what kind of Mish mash will get in.
From the FAQ, https://mebiomed.org.uk/faqs/
With well-defined inclusion criteria (see Andy's comment above mine), the size of the sample does not affect the likelihood of "mish mash" getting in. But, having such a large sample increases the statistical power, which means that the study's findings are less likely to be affected by any "mish mash" that do get into the sample.
I just find it hard to believe there are 20,000 people in UK with real ME. But that's only my humble opinion. I know here in Ireland figures are totally inflated.
Why do you think that?
We don’t have hard numbers such as exist for a well-defined and diagnosed disease like, ohhh, Type I diabetes. We do have a range of estimates, using varying definitions of ME/CFS/CFIDS.
Population of the UK is about 67 million. What do you believe the incidence rate of ME (‘real ME’) is?
How long do you expect them to take to decide whether to fund the study or not? Is it unpredictable or is there a rough estimate for how long such decisions usually take
Application goes in tomorrow, we expect to hear the decision in March.
Life is going to be hard in the interim, I can't do much with my fingers crossed all the time!
Gosh, that's quicker than I expected! Excellent – will keep everything crossed.
This is really great:
Many thanks to everyone who has helped to get it to this stage.
Just one note of cation: Despite the success in getting so many people to sign up in such a short time frame, my suspicion is that there may be a ceiling of around 10–15 thousand volunteers that could be recruited through the sort of channels that have been used thus far. That would be in keeping with the number of people who have signed some of the more successful UK online ME petitions.
Given that some of the people who sign up will not fulfil the criteria for inclusion in the study, that would still mean that a significant number of patients will need to be recruited through other channels – ie mainstream media. I also think that will help to ensure a less biased selection of patients. My understanding is that this is the intention, so hopefully that will not be a problem if it gets the funding. Fingers crossed.
Yes, very much so. While we are delighted with the level of support shown so far, we would like to err on the side of caution with regard to recruitment, so we're not assuming that the level of response so far means it will be easy to get to our target of 20k participants.
It's excellent news, isn't it – very encouraging.
This is true, but so far no money has been available to spend on publicity, and I don't think GP practices or hospital clinics have been approached yet (it's too early to get them on board). I think if the team can utilise these channels, as well as social media and word of mouth, the reach could be much greater.
Edinburgh Uni has another genetic study which I have provided a saliva sample for. The written material sent to me said it should take 2-5 minutes but it took me 12 minutes to eventually get up to the line on the tube (and that was with my other half coming in with a plate of yummy smelling food)
The instructions said that one should not eat, drink , smoke or chew gum for 30 mins before giving the sample but maybe this can be checked when they move into the ME group.
Just as an aside there was a questionnaire with the current study and under health conditions they did ask if one had ME/CFS but I can't remember how it was written.
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