Closed UK: DecodeME updates, was recruitment thread.

Hi @Peter Trewhitt

I'm sorry that you haven't been asked to provide a sample. As I'm sure you'll understand, I won't go into the details of our inclusion and exclusion criteria, for fear of biasing answers that people might give, other than to say that we confirm the case definitions that we are using (IOM and CCC) here, https://www.decodeme.org.uk/faqs/wh...ally-what-about-the-oxford-and-nice-criteria/

We need people to answer as honestly as possible, in order to build up the most accurate bank of responses to the questionnaire that we can. As Trish highlights above, donating a saliva sample isn't the entirety of people's participation - our survey, through the questionnaire, of the largest population of people with ME in the UK (probably ever?) will provide valuable data moving forwards.

I can totally understand why people will feel disappointed if they aren't asked for a sample but everyone who takes part is helping to make a difference, just by completing the questionnaire.

 

On the Protocol for DecodeME which was posted on this forum in July: https://www.s4me.info/threads/proto...-2022-devereux-cooke-et-al.28666/#post-429466

It says: “Those eligible for the study are at least 16 years old, pass international study criteria, and lack any alternative diagnoses that can result in chronic fatigue”.

So I think that’s one of the criteria at least. I understand the team don’t want to talk about the exact inclusion criteria as it could bias answers, but I can see people are already writing under Decode ME’s Facebook post, expressing how upset they are to not be selected, & asking why exactly they’ve been rejected, so I think there’s going to end up being more and more speculation anyway. Especially as so many people have been looking forward to this so people could take rejection personally. And there already is some info out there - like the Protocol which was already posted here - so people will figure it out eventually. I personally think it would be better to openly talk about what the inclusion criteria is exactly.

 

Please see my post here, https://www.s4me.info/threads/uk-de...-12pm-12th-sept-2022.29463/page-7#post-437865

 

There is an awful lot of emotion being expressed on the few ME social media sites I routinely follow, both seeing progressing to DNA sampling as validation of the reality of individuals’ ME and in contrast seeing not progressing as a denial of their experience.

 

Is this the one time when it is legitimate to say that online communities sometimes include people who miscomprehend information and jump emotionally to the wrong conclusions, without being cancelled and bargain-binned alongside J K Rowling?

@Andy - I thought the “thanks but no thanks” email couldn’t have been better or more kindly worded.

 

I too had an email this morning saying I was being sent a 'spit kit'. I did feel a surge of satisfaction.
I can understand those not selected feeling disappointed. I haven't read anything on facebook today so am not familiar with responses other than on here.

edit: Mr B has a rowing buddy whose brother has ME. They have shared info over the last couple of years but the other family don't seem to be attached to any organisation. We are sending on the link to Decode to try and attract in some who might otherwise be difficult to reach.

 

There are a lot of people not being asked, Its very weird. You might be stuck for samples in the UK if you are turning down people for thyroid or sleep apnea they are very common, you must know that.
The email could have said you don’t meet the criteria because xyz. Its not going to take long before people work it out.
It was a strange email.
Without ruling out a psychiatric diagnosis’s too, being its the most common misdiagnosis - I think that’s more weird than sleep apnea or thyroid disorders.
You obviously have your reasons.

 

Absolutely, agree it's important that people complete the questionnaire honestly and without bias to provide the best possible data quality for the survey. I did and I've received an email thanking me and letting me know they won't be requesting a saliva sample. I'm familiar with both sets of criteria being used and there's one symptom requirement in one of the criteria, the way it's phrased I don't really identify with and think it's entirely subjective, so I didn't tick it. I suspect this is the reason for me not being selected to provide a DNA sample. If I had ticked this symptom that would have artificially inflated it and perpetuated what might be inaccurate data reporting.

It's also possible an 'other condition' condition I listed might have excluded me. It shouldn't as it's present in 25% of the general population and interestingly, according to some clinic data, much more common in ME/CFS. So could have been an interesting data point for the survey.

 

Sorry if this has been asked; I have not been feeling up to completing the questionnaire - when is the deadline? Did I miss it? Thanks in advance.

 

At this stage, practically, there is no deadline, so take what time you need to complete the questionnaire.

 

Thank-you! Phew! I started to worry I had missed it after all the waiting! Glad it's progressing.

 

Are efforts being made to enrol people who don’t live on the internet? Were any people with a background in epidemiology or statistics involved in designing this project?

 

It may have been said somewhere and I missed it, but do patients need to fulfil both sets of the criteria being used, or just one or the other, to qualify for DNA sampling?

 

Yes, we are making efforts to promote the study offline. And Professor Martin Tobin, who is a Professor of Genetic Epidemiology and Public Health, https://le.ac.uk/people/martin-tobin, is a part of our Scientific Advisory Board.

 

If they are excluding Glandular fever then that’s really weird!

Its been in the press and on prime TV news and radio. I think PR for it has been very good, so yes “people off the internet” will be well aware of it,

• Prof Martin Tobin, Professor of Genetic Epidemiology and Public Health at the University of Leicester.
  
  https://www.decodeme.org.uk/about-us/

 

I have been seeing a lot of frustration from people who don't meet the criteria for spit sample collection. I'm sure the team at Decode are aware of this. I'm wondering if this has the potential to become an issue over the next week or two, and even going forward...

I don't think that's a good idea. It's time consuming for a project of this size, could make people feel more disappointed if they don't agree with the reasoning, and could potentially lead to people changing their answers, as someone pointed out earlier in this thread.

 

My only concern is that by excluding people with common co morbidities (if that is indeed what is occuring), is there not a chance that Decode will end up not studying a significant cohort of ME patients and therefore exclude them from future biomarkers/treatments?

 

I have IBS too, as do many people with ME, but I am being sent a spit kit. I'm pretty sure I ticked the box for IBS.

 

Other confusion is arising due to enrollees not realising that registering their interest last year is not the same as signing up. I don't think this was made particularly clear, as I was confused when I landed on the Decode sign-up page last week. If you see other patients saying they haven't received an email, please make it known to them that they probably haven't actually 'signed-up'.

 

My concern is also that the more severe patients are the ones more likely to be suffering from severe and common co morbidities as well. The criteria may be selecting out the most severely impacted or the co morbidity that is actually most indicative of the disease process. Its certainly selected out those that don't have a good GP and those too severe to get a diagnosis from one of the few ME/CFS clinics or just a bad clinic around the country introducing a postcode lottery. There are various biases being introduced and avoided with the criteria and we don't have the clarity to understand the impact.