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

[Countrygirl]

https://www.theguardian.com/society...2KCOefscZKuCca9AfIGslXjWLpfgpSi49S9VotmMcglJE

ME / Chronic fatigue syndrome
UK to launch world's largest genetic study into chronic fatigue syndrome

Research aims to shine a light on condition that is believed to affect 250,000 people in UK

Haroon Siddique

Tue 23 Jun 2020 00.01 BST

People with ME experience exhaustion that is not helped by rest. Photograph: Milkos/Getty Images/iStockphoto

The world’s largest genetic study into chronic fatigue syndrome is to be launched in the UK after receiving £3.2m of funding from the Medical Research Council and National Institute for Health Research.
The research aims to shine a light on the debilitating long-term condition, about which little is known, by collecting DNA samples from 20,000 people who have CFS, also known as myalgic encephalomyelitis (ME).
CFS is believed to affect about 250,000 people in the UK and has been estimated to cost the economy billions of pounds each year. Individuals experience exhaustion that is not helped by rest, with one in four so severely affected they are unable to leave the house and, frequently, unable to leave their bed. Other symptoms include, pain, mental fogginess, light and noise sensitivities, as well as trouble with memory and sleep. No effective treatment exists.

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The DecodeME study is being led by a partnership of scientists and patients including Andy Devereux-Cooke. He said: “As someone living with ME/CFS, I’m well aware that the patient community has waited a long time for a study such as this one that has such a strong, genuine element of patient involvement. All of us involved with this research project hope that it can start to address the totally unwarranted stigma and lack of understanding that so many patients with ME/CFS face on a daily basis.”
The hope is the study will aid development of diagnostic tests and targeted treatments by pinpointing tiny differences in a person’s DNA that may affect their risk of developing CFS and reveal the underlying causes of the condition.

The samples will be compared with a similar number of non-CFS matched controls, which could be drawn from the UK Biobank.
Principal investigator Prof Chris Ponting from the human genetics unit at the University of Edinburgh said: “Our focus will be on DNA differences that increase a person’s risk of becoming ill with ME/CFS. We chose to study DNA because significant differences between people with, and without, ME/CFS must reflect a biological cause of the illness. It is our hope that this study will transform ME/CFS research by injecting much-needed robust evidence into the field.”

People with CFS who are aged 16 and over can volunteer to take part from home by signing up on the study website. When it begins, they will be mailed a collection kit and asked to send back a saliva sample, which will be compared with those from healthy controls.

Genome-wide association studies have previously helped uncover the biological roots of many other complex diseases, including type 2 diabetes and Alzheimer’s disease.

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Join us to help create the world’s biggest study of the causes of ME/CFS

We are the ME/CFS Biomedical Partnership, a collaboration between researchers and people with ME/CFS, carers and the public.
The DecodeME DNA study aims to help us understand the disease and ultimately find treatments.
We have secured funding for a very large study to analyse DNA from the saliva of people with ME/CFS to see whether the disease is partly genetic and if so, help pinpoint what causes it. The study should help us understand the disease and ultimately find treatments.

We need 20,000 participants – and people to help us find them. If you’re interested, please let us know now, so that when the study launches in early 2021, we can start reaching out to potential participants and collecting samples immediately.
It will be a huge challenge to do the largest ever biomedical study of ME/CFS so we need your help – whether you have ME/CFS or not!

The largest ever DNA study of ME/CFS

Get involved

We’re focusing on recruiting from the UK for now and are already well on our way with early sign-ups. But we’ll expand to other countries if necessary, so if you’re outside the UK, please do sign up now. You must be 16 or over to take part.

The study is being led by Professor Chris Ponting of the Medical Research Council Human Genetics Unit at the University of Edinburgh in collaboration with the UK ME/CFS Biobank at the London School of Hygiene & Tropical Medicine.

People with ME/CFS are at the heart of the study, with a patient and a carer as co-investigators alongside the scientists and a steering group of people with the illness, carers and charities. The work is funded by the Medical Research Council and the National Institute for Health Research.

To find out more about the study you can read our latest updates, FAQs and our explanation of the science.

This is an historic opportunity for people with ME/CFS and we look forward to working with you to make it happen.

Complete this short form to get involved:

Whether you would like to take part in the study or just receive our email newsletters, please complete the form below.


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If you have ME/CFS, would you be willing to take part in a study investigating the genetics of the condition? Please note your response does not commit you to doing anything. When the study is ready to go, we will ask you whether you’d like to take part.
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If you have ME/CFS, please tell us your age range by choosing one of the following:

 

[Inez]

Signing up! Thanks

 

[Wishful]

It seems that they require an official medical diagnosis from a doctor. I haven't bothered with that, since it's so difficult to get and doesn't provide any worthwhile benefit. I wonder how many other PWME are in that category.

 

[bertiedog]

Have registered.

Pam

 

[Countrygirl]

Here is the official announcement from the MRC: https://mrc.ukri.org/news/browse/the-largest-genetic-study-into-myalgic-encephalomyelitis-in-the-uk/

News

The largest genetic study into myalgic encephalomyelitis in the UK, led by a partnership of patients and scientists, is launched
23 Jun 2020

A new study has been funded to analyse samples from 20,000 people with myalgic encephalomyelitis (ME), also diagnosed as chronic fatigue syndrome (CFS, or ME/CFS), to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition.

The study, ‘DecodeME’, is jointly funded by the MRC and National Institute for Health Research (NIHR) with £3.2 million (£1.8 million MRC, £1.4 million NIHR) and hopes to aid development of diagnostic tests and targeted treatments.

ME/CFS affects an estimated 250,000 people in the UK, of all ages, and from all social and economic backgrounds. This debilitating set of conditions can leave patients suffering from symptoms including extreme levels of fatigue, pain, inability to process information, and light and noise sensitivities. One in four people with ME/CFS are so severely affected they are house- and frequently bed-bound.

Despite its high cost to patients, the economy, the NHS and society, very little is known about the causes of ME/CFS, or how to treat it effectively. Previous research has shown that a greater risk of ME/CFS may, in part, be inherited.

Professor Chris Ponting, from the MRC Human Genetics Unit at the University of Edinburgh, who is leading the study, says: “Our focus will be on DNA differences that increase a person’s risk of becoming ill with ME/CFS. We chose to study DNA because significant differences between people with, and without, ME/CFS must reflect a biological cause of the illness. It is our hope that this study will transform ME/CFS research by injecting much-needed robust evidence into the field.”

The study has been developed through a partnership between scientists and people with ME/CFS at the heart of the study, which has been designed with input from a dedicated Public and Patient Involvement Steering Group from the inception stage. The PPI Steering Group is made up of people representing groups or networks from the ME/CFS community including patients, expert clinicians and representatives from most UK charities

 

[sebaaa]

Seems like the number of sign-ups is increasing nicely... Make sure to sign-up if you live in the UK!

https://twitter.com/i/web/status/1275386725393719300

 

[Pearshaped]

I already signed up in february.
I never thought they would get the funding.
But now I see its only for patients in the UK ?😔 anyway Im exited and hope they will come across something which will help us!

 

[Pearshaped]

Bumping up the thread and dare to tag
@sb4
@Sarah94
@Jessie 107
wanted to tag (and nag) others but can‘t remember who else is from UK

 

[Jessie 107]

Bumping up the thread and dare to tag
@sb4
@Sarah94
@Jessie 107
wanted to tag (and nag) others but can‘t remember who else is from UK

Yes, I have signed up 🙂

 

[Simon]

Thanks for posting. This is a great chance to take part in a study, though for reasons including cost, it will aim to recruit from within the UK (though go international if needed).

 

[SWAlexander]

https://twitter.com/DecodeMEstudy

 

[Pyrrhus]

Related discussion:

What DecodeME learned from the UK Biobank genetic study into M.E./CFS
https://forums.phoenixrising.me/threads/genetics-study-on-me-decode-me.85204/

 

[Carl]

It seems that they require an official medical diagnosis from a doctor. I haven't bothered with that, since it's so difficult to get and doesn't provide any worthwhile benefit. I wonder how many other PWME are in that category.

My thoughts exactly. I have never managed to get a diagnosis despite the causes being very severe in me. Utterly useless GP who even recommended that I eat saturated fat while knowing that my father and grandfather both died at a very early age of heart disease and me having very significant risk factors ie T1 diabetes. I do not know how these doctors can justifiably practice medicine.

BTW ME is not genetic and I believe that this research will not reveal the cause seeing as the cause lies with a pathogen in the digestive system. I am suprised that no one has started to try and find the pathogen that Daniel Vipond mentioned in his research. I new the location a few months after he started his Phd.

Taking antimicrobials is a very bad idea because it promotes resistance and will make it more difficult to destroy them.

[EDITED for Smelling mistake ]

 

[Pyrrhus]

Update: DecodeME to be launched 2022

https://twitter.com/i/web/status/1458800316032462849

 

[nerd]

It finally happens after quite a delay: The genome research project DecodeME opens its phase 1 trial on January 31 for 550 patients in the UK, staged in 50 at first, and then 500 more.

On Thursday, January 27, they will have another webinar explaining their progress and answering questions.

Unfortunately, patients in other countries will have to remain patient.

Please find the full press release here:

Great news! DecodeME opens for first participants this month.

 

[ruben]

Have registered.

 

[BrightCandle]

"It's nearly time to take part in DecodeME. We’ve improved our questionnaire, tested our systems and DecodeME is ready to launch in September. .. To take part in DecodeME you will need to be over 16, live in the UK and have had an ME/CFS diagnosis by a health professional "

Email making the rounds for DecodeME. I don't think people expected that a diagnosis by a doctor would be required given how incredibly difficult that is in the UK. Guess I am excluded. This is going to cause problems given the state of the UK's level of systemic prejudice. Its notably quite different to the FAQ and conversations they had before. Disappointing to say the least.

 

[Revel]

I don't think people expected that a diagnosis by a doctor would be required given how incredibly difficult that is in the UK. Guess I am excluded.

Yes, I agree and I am sorry that you are likely to be excluded from the DeCode ME research project as a result.

I have had ME since childhood but didn't receive an "official" diagnosis until I was 48!

My GP flat refused to entertain the possibility that I had ME until my POTS consultant advised that this was the case. Once he had it in writing from another medical professional it was grudgingly accepted.

Incidentally, I had to self-diagnose POTS (which I have also had since childhood), then push my GP for a referral. Had I not done so, I doubt that I would have an "official" diagnosis either, @BrightCandle, now a full half century since onset.

It shouldn't be this hard. Post-diagnosis no help whatsoever has been forthcoming from my GP, but I should count myself "lucky" that at least I have a label.

 

[BrightCandle]

Yes, I agree and I am sorry that you are likely to be excluded from the DeCode ME research project as a result.

I have had ME since childhood but didn't receive an "official" diagnosis until I was 48!

My GP flat refused to entertain the possibility that I had ME until my POTS consultant advised that this was the case. Once he had it in writing from another medical professional it was grudgingly accepted.

Incidentally, I had to self-diagnose POTS (which I have also had since childhood), then push my GP for a referral. Had I not done so, I doubt that I would have an "official" diagnosis either, @BrightCandle, now a full half century since onset.

It shouldn't be this hard. Post-diagnosis no help whatsoever has been forthcoming from my GP, but I should count myself "lucky" that at least I have a label.

I also just realised according to their website and FAQ they are not including patients diagnosed on the NICE 2007 criteria. So here is a question, how many people in the UK have received an ME/CFS diagnosis on the basis of Canadian or American criteria instead of NICE guidelines? Its hard enough to find 25k ME patients willing to participate in the UK out of an estimated population of 250k (its an estimate precisely because of how hard diagnosis is to get), 10% is one heck of a target. To then exclude all that have been diagnosed in the UK under UK criteria and requiring a doctor diagnosis is frankly insanity! Seriously its a set of people containing one random Canadian/American who got their diagnosis abroad and now lives in the UK and no one else.

DecodeME has lost the plot.

 

[Simon]

"It's nearly time to take part in DecodeME. We’ve improved our questionnaire, tested our systems and DecodeME is ready to launch in September. .. To take part in DecodeME you will need to be over 16, live in the UK and have had an ME/CFS diagnosis by a health professional "

Email making the rounds for DecodeME. I don't think people expected that a diagnosis by a doctor would be required given how incredibly difficult that is in the UK. Guess I am excluded. This is going to cause problems given the state of the UK's level of systemic prejudice. Its notably quite different to the FAQ and conversations they had before. Disappointing to say the least.

Hi BrightCastle
I'm part of the DecodeME team and want to clarify that we are simply asking for a diagnosis of ME or CFS - we don't specify any criteria for the healthcare professional diagnosis. If a doctor or other healthcare professional has told you that you have ME or CFS, you qualify to join DecodeME (assuming you also live in the UK and are aged 16 or over).

We then use a questionnaire to apply IOM/CCC criteria.

I hope that helps.