DecodeME - UK ME/CFS DNA study underway

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Invisible Woman said:
What about the CFS clinics themselves? Whether they follow BPS ideology or not surely they can't deny that such a project might be useful - even if it was only in the hopes they're proven right?
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Agree that it’s sensible to promote through the CFS clinics (provided care is taken to ensure that the sample is not heavily distorted to over represent people who attend CFS clinics who may not necessarily be representative of the wider ME/CFS population). However, I can’t think of an outcome of DecodeME which would prove BPS ideology right.
 
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Robert 1973 said:
However, I can’t think of an outcome of DecodeME which would prove BPS ideology right.
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This was one of the arguments put forward to get patients to support PACE. It would "prove" once and for all.... :rolleyes:

If they're genuinely interested in learning more about the condition and patients welfare then they shouldn't have a problem supporting this research.

As for patients diagnosis....well, that's a bit of a mess generally, really. Even outside the clinics.
 
DigitalDrifter said:
The 250,000 figure is way over inflated.
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It may be at the top end of reasoned estimates but 250k for a 67 million population does not rely on the extreme rates proposed pscy focussed studies e.g https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-3-19 One of the oddities of ME/CFS research is that wholly arbitrary age limits have been applied to patient population estimates, giving the appearance that somehow ME/CFS ameliorates and ultimately disappears with age. If true that would be remarkable and should be a focus of research - of course it is highly improbably that ME/CFS ameliorates with age and the most likely case is that older ME/CFS patients have simply been excluded from epidemiology of ME/CFS. There is some consideration of these issues here: https://anumbersproblem.home.blog/2020/01/22/age-of-the-me-cfs-patient-population/
 
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Sorry if this has already been suggested, i'm super foggy at the moment. But even just asking GP's to tell their ME/CFS patients about it. I know there are some horrific medical profesionals out there, but there are also some good ones who just want to do something for their patients but don't know what else to do. This could give them a sense of actually helping their patients and having something positive to contribute.

And i know the study is UK wide, but every city has a sense of pride in what it does/is/has... So why not use that especiallialy in Edinburgh playing on the fact that this is in our city, we have this world class study right on our doorstep, and we can be a part of it.
 
"We are excited to announce we will be holding a live Q+A webinar on Zoom this Friday!

We want to ensure you have as much information about the study and what we are trying to achieve. We are therefore delighted to invite you to our next community webinar this Friday 6 August at 3:00pm. We know that some people do not use Facebook so we will be running this webinar direct through Zoom.

It is okay if you cannot attend, we will be uploading a recording and transcript to our website so you can review at your own pace.

In this webinar we will provide an update on the work that has been done behind the scenes to ensure DecodeME is a success when we launch. There will also be a Q+A so make sure you send over any questions by replying to this e-mail or by sending them to info@decodeme.org.uk. "

Register at https://us02web.zoom.us/webinar/register/WN_IoVr0u58TAqqnZ_pPv5NPA
 
Andy said:
"We are excited to announce we will be holding a live Q+A webinar on Zoom this Friday!

We want to ensure you have as much information about the study and what we are trying to achieve. We are therefore delighted to invite you to our next community webinar this Friday 6 August at 3:00pm. We know that some people do not use Facebook so we will be running this webinar direct through Zoom.

It is okay if you cannot attend, we will be uploading a recording and transcript to our website so you can review at your own pace.

In this webinar we will provide an update on the work that has been done behind the scenes to ensure DecodeME is a success when we launch. There will also be a Q+A so make sure you send over any questions by replying to this e-mail or by sending them to info@decodeme.org.uk. "

Register at https://us02web.zoom.us/webinar/register/WN_IoVr0u58TAqqnZ_pPv5NPA
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This latest email went to my junk folder - just for information!
 
Good point about GPs @Kirsten i have an appointment actually in the surgery for my hypertension etc (not ME of course!!) annual review in a couple of weeks. I’m going to ask them if they are aware of DecodeME and if they will share it on their Facebook page ideally make all staff aware so if they have any dealings with patients they could mention the study to them.
 
Andy said:
"We are excited to announce we will be holding a live Q+A webinar on Zoom this Friday!

We want to ensure you have as much information about the study and what we are trying to achieve. We are therefore delighted to invite you to our next community webinar this Friday 6 August at 3:00pm. We know that some people do not use Facebook so we will be running this webinar direct through Zoom.

It is okay if you cannot attend, we will be uploading a recording and transcript to our website so you can review at your own pace.
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Good wishes for for everyone who will present, talk and otherwise participate on the webinar.

Sorry to be not able to attend today but looking forward to the transcript.
 
A very disgruntled person in one of the facebook groups is annoyed that their question was not asked and has picked up that this research is focused on drug development not root causes. It is switching a lot of people off .

Perhaps some clarification on social media would not go amiss.
 
Amw66 said:
A very disgruntled person in one of the facebook groups is annoyed that their question was not asked and has picked up that this research is focused on drug development not root causes. It is switching a lot of people off .

Perhaps some clarification on social media would not go amiss.
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What’s wrong with drug development? How do people think effective treatments are going to come about? Management strategies? Eating healthy?
 
Amw66 said:
A very disgruntled person in one of the facebook groups is annoyed that their question was not asked and has picked up that this research is focused on drug development not root causes. It is switching a lot of people off .

Perhaps some clarification on social media would not go amiss.
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I can pass this on but do you feel that they have a point? When it says on the front page of the website, "Our study aims to find root causes of why people become ill with ME/CFS", and repeats the point elsewhere, I would imagine that the DecodeME team are likely to feel that the messaging has been clear on this point already, but if that isn't the case then we can try to improve it.
 
Amw66 said:
A very disgruntled person in one of the facebook groups is annoyed that ...d and has picked up that this research is focused on drug development not root causes
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I can't understand where they got that idea from.

The whole aim of DecodeME is to find root causes as the critical first step to getting drug treatments (v hard to develop a drug if you don't know the biological problem).

From the website:
"The study should help us understand the disease and ultimately find treatments."
 
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