Things are happening! The chronic fatigue syndrome (ME/CFS) and post-infectious field in general is moving forward more quickly in more different ways than it ever has in the past. We can thank some far-sighted organizations for that.
The Solve ME Initiative’s soon-to-be greatly expanded Patient Registry is a great example of an organization investing in infrastructure that benefits the entire ME/CFS field. Likewise Solve ME’s focus on advocacy at the legislative level is another example of an organization doing the work necessary to move the entire field forward. Similarly, Health Rising’s Big Map Project will soon provide ways for patients from across the globe to find and communicate with each other, find (and review) doctors, and find other resources.
StudyME!
The StudyME project seeks to accelerate research into ME/CFS, fibromyalgia, long COVID and other post-infectious diseases.
The Open Medicine Foundations StudyME project is another example of an organization with its eye on the ball and is moving the entire ME/CFS field forward. The StudyME project is making it easier for research studies and clinical trials to get a leg up on one of the stickiest problems they face – simply finding people to be in their studies!
That, it turns out, is not a small task. (Who knew?) Ask Dr. Klimas – who several years into her long COVID study is still trying to find participants. Nor is it an inexpensive one. Remarkably, simply finding participants for clinical trials can eat up 40% of the trial budget! Sometimes studies and trials have to resort to advertising for patients (“Are you feeling fatigued?”) (You can imagine the kind of participants those studies get.).
ME/CFS used to have a network of local organizations that could help direct patients to studies but they are long gone. What we need is an international effort that can alert any researcher to patients near her/him who are available and now with the Open Medicine Foundation’s StudyME project, we have it.
I know of at least two ME/CFS studies that failed to get completed because they failed to find enough participants. That’s a horrible thing to have happen in a field that needs every research dollar it can get its hands on.
The Open Medicine Foundation’s StudyME project is helping ensure that THAT doesn’t happen again. It will also
- cut down on costs thus allowing larger sample sizes – and more credible results
- accelerate the speed of research by getting patients to the studies more quickly
- Improve the credibility of research findings by providing high-quality, verified ME/CFS patients
- Improve research findings by allowing researchers to find the best kind of patients for their studies
- Provide an easy way for the OMF to do further surveys that highlight the challenges of living with ME and other post-infectious diseases
- Enhance collaboration between researchers
It’s a win-win for everybody. The program literally takes 5 minutes to sign up for, no medical information is required and you simply check the kinds of studies you might be interested in. As always your contact information is kept confidential: only the OMF and the researchers associated with it will have access to it.
We know the way out of this illness for the vast majority of people goes through one road and one road only – research. You can help bring that future closer by signing up for the OMF’s StudyME project. The project is open to people with ME/CFS, Long Covid, Fibromyalgia, and other post-infection illnesses as well as healthy controls (have your family/friends sign up as well.)
Learn More Here
Sign Up Here
for healthy folks too?
Absolutely. Really critical to find healthy controls.
Hello Cort, this is the guy in Canada who was about possibly do an article with you including Aldosterone and Adrenal fatigue or exhaustion last April or May. I have found some very important research/treatment/Doctors/and a course website for all Autoimmunity, or in the case of the website, including it. The Doctors are Terry Wahls, Roger Seheult (incredibly good clear lecturer on physiology and biochemistry/disease, and Kari Young. Wahls and Young are reversing autoimmunity. Dr. Wahls had very debilitating MS and now walks, runs, bikes, looks strong. As a physician, she was facing eventual death from the MS. When she radically altered her diet/supplements, after 1 month she saw improvement. Now she educates other world doctors on nutrition as treatment.
What happened with losing touch with you by email is that my password was hacked, I could no longer use my address. Then I got a new one but also a job and didnt have time to get back to you.
The website is OneCommune.com.
Seheult also is co-founder of the site/service Medcram.com used by 1,000,000 Physicians but he is also on onecommune regarding autoimmunity. Wahls has the Dr. Wahls’ Protocol and a book on her Paleo diet whose radical changes saved her life. Its available as a trial site with money definitely refunded if you wish to leave
A bit of topic and at the same time not. for people living in the UK. the largest research DecodeME is still looking for participants with ME/cfs! it can be verry verry ill people where parents or other caregivers can fill in the questionaire, only needed a spit test for genetic research.
So please, if you are from the UK, do the test.
If i remember correct, they wanted 25000ME/cfs patients, 25000 healthy controls (not needed, they have a biobank for that) and 5000 long covid participants. they need more ME patients! to make the research as robust as they can. so please join them.
Yes, please do! Decode ME is our first really large disease genetic database. and is crucial to understanding to what’s going on with ME/CFS. Every disease needs one and we finally have one. (Of course, it only really works if you fill it up.)
Check it out and if you’re in the UK please sign up – for all of us.
https://www.decodeme.org.uk/
UK people, please help DecodeME study! It is urgent! i copyd their last e-mail but left away my name:
if needed for something, you get help! if to severe caregivers can help with questionaire, only needed spit test.
they mailed: “Firstly, a big, one year since launch, thank you to everyone who has participated in the study so far. We couldn’t do it without you!
We now have some important information to share:
We are now in the final stage of participant recruitment and, if you haven’t already done so, you have until the 15th of November 2023 to complete your online questionnaire.
At 5pm on the 15th of November, we will be closing our registration portal to both new participants and to those who have signed up but not completed their questionnaire.
Participants, who sign up and complete their questionnaire by the 15th of November deadline, and who are invited to participate in the DNA stage of the study, will be sent a spit collection kit. Final deadline for posting these back to DecodeME is the 31st of January 2024. As there can be unpredictable delays with the post, especially over the holiday season, please post your kit back to us as soon as possible and before this date, if you can.
This is the last call to sign up and be part of the DecodeME study. Please join those in the ME/CFS community who are doing something extraordinary by taking part.
Almost 25,000 people have already signed up and completed their questionnaire, and almost 20,000 participants have also been invited to provide a DNA sample. This is great news, thank you to everyone who has participated!
However, we still need more people, and this is the last chance to be part of this ground-breaking study. So, if you, or someone you know, are 16 or older, live in the UK and have a diagnosis of ME/CFS, please do take part now to help us decode ME/CFS at http://www.decodeme.org.uk/portal
Finally, we currently have over 4,000 spit kits that have been sent out and not yet returned. If you have received your kit, but have not yet returned it, please send it back to us as soon as possible. If you have questions about returning your sample, then our FAQ page has a number of answers that might prove useful. Each sample returned will strengthen the results of our research, so we appreciate every kit sent back.
If you have been waiting more than three weeks for your kit, since receiving an invite to take part in the DNA stage, please contact the DecodeME team, email info@decodeme.org.uk team or on 0808 196 8664, and we will investigate and order you a replacement kit, if required. The final deadline for requesting replacement kits is the 15th of November 2023.
So, if you are yet to complete your questionnaire or haven’t yet signed up as a participant in the DecodeME study, but would like to do so, please visit http://www.decodeme.org.uk/portal before the 15th of November.
Thank you for supporting the study,
Warmest wishes,
The DecodeME Team”
I mailed them long time ago and asked questions. if verry lucky, there might be allready excisting treatment(s). They also work together with precisionlife. And are in contact with other countrys for replication. I will if i can, mail them soon again. back. A long time ago they had allready a verry large paper on 1750 questionaires made with interesting results. they work verry hard. so please help! and spread the word!
Hi, great that you’re publicising this. I signed up & I’ve got my spit test waiting to do it tomorrow & then straight in the post.
It was highlighted on a thyroid health forum I’m on & some people from there have signed up.
Excellent that it’s mentioned here again.
Let’s keep fingers crossed that their research pays off. I’m not bedbound as you are but housebound due to serious Multiple Chemical Sensitivity. It hits us in so many ways, doesn’t it?
Great, even if i can not participate because I do not live in the UK, I know the study well and it is huge and hopeful and verry importantl!!!
do you know facebooksites, anything in the UK where you can place it also? because I do not know wich places in the UK? thanks!!!
thanks!!!
I will post again on the ThyroidUK forum on Health Unlocked & look for other suitable forums. I’m sure there are others on there. I think there’s a specific fibromyalgia forum so that would be ideal.
thanks for the effort!!! this study must make it!!! I do not know because it is an ME/cfs study, if FM fourm is ideal. you know it better then me 🙂
I’ve shared it multiple times in a couple of FB groups and another site I’m on. The other thing UK people can do is ask their doctor to publicise it in their practice. I think the people behind the study can’t do this because of the ethics side of things? But patients are allowed to and there is a section on the DecodeME website that has resources for GPs.
It is frustrating that more people don’t sign up for these things when everyone bemoans the the lack of research. I thought they would find enough participants in no time, but it feels like there is a lot of apathy. (obvs being aware that not everyone is capable of these things, but DecodeME in particular has made it possible for all but the most severe to take part)
thank you verry much for the effort you did with sharing!!!
ps yes, it hits us in so many ways! it is a cruel desease. Glad you are homebound and not bedbound, stay safe!
Hi Konijn,
I did the DecodeMe study and have just signed up to StudyMe. It makes me so sad that people are not coming forward to join up to this research. How are we ever going to solve it if people don’t take part. I don’t understand the reluctance to do it. Hang in there Konijn. I still think that progress is being made and there will be answers
thanks for doing both! yes it is unbelievable with the decodeME study, they do not find, hopefully now found, enough people. Especially with the worldwide biggest study! you can say, a once in a lifetime!!! I hang in as long as i can. you to!!!
I submitted my test from Southampton UK & I want to say I am very grateful to all of you involved in this study.
I got notice that my DNA was extracted at about 7 weeks if this is the right word & any of you reading this blog, please, do so ASAP.
The test was easy to do & was mailed back up.
I hope my DNA is the one that finds the cause of this horrible torture & leads to the Cure…
xx God bless all of you xx
thank you for doing the test!!! I can not because do not live in UK… but even verry severe ones can with there caregivers and can get help from decodeME.
it is urgent to do!!! it is so importent the study…
everyones questionaire, spittest is importent, the more the better and the more robust the outcomes will be…
thanks, hope you get some answers & relief/cure soon
can you please share it on UK facebooksites, or other places to do?
i do not know the UK sites because live in belgium…
I have already & to countless patients shared it, most patients know about this DecodeMe
thank you!!!
your welcome
Cort, can you please place my second message on a good place so that UK people see it and you can change it that the most importent is seen. thanks!
Cort, how about doing a blog on DecodeME titled “DecodeME seeks participants in the UK!? It might bring in a few more people.
that would be great because it is so urgent! And a really big importent research study 🙂
I will! I didn’t realize that a deadline was approaching 🙂
Great, maybe put right in the blog headlines what Jane Rigg below relays: ” They have broadened the acceptance criteria so please ask again if you were rejected.”
thanks for writing this! fingers crossed! hopefully, finally, a good outcome 🙂
oh, thank you so much Cort!!! it is to important to let go, to big…a tremendous big study for ME/cfs 🙂 thanks a lot!!!
Thank you Konijn for the awareness raising. I’m UK and copleted it a while ago. They have broadened the acceptance criteria so please ask again if you were rejected.
I can’t believe how so many UK MEeps haven’t got round to this. It’s OUR disease, OUR research and for OUR benefit. xx
I can not believe it to how many people they still need, did not send there spittest or questionaire back.
it is the largest trial on ME/cfs in the world and it is huge!
sadly enough i can not do more then placing it here, because i live in an other country and can not participate.
do you know facebooksites, anything in the UK where you can place it also? because I do not know wich places in the UK? thanks!!!
If we can’t remember if we signed up yet (hello brain fog) should we sign up? Is there a system to stop you if you’re duplicating yourself?
Most systems do – they store your email address – and if it pops up again they alert you. I would give it a try. 🙂
is the OMFstudyME only for the countrys where they have researchers? here we have no good researchers. 2 but bad experience and not really researchers, probebly because of lack of money and still cfs, GET and CBT.
also i am 99% bedbound, can not go to researchers.
They have an option for only being contacted for studies you can do from home.
I think it’s for everybody – with the hope that when those researchers do show up they’ll be able to quickly find patients for their studies and clinical trials.
Great idea! I hope it works. Whenever somebody wants my contact info, I want to know where this information will be shared. With advertisers and marketers? With medical companies? Anyone else? I followed the link; got only general info there. “Sign Me Up” took me to more basic info, and at the bottom of the page, a tiny link to “Privacy Policy.” That led to Zudu Labs’ privacy policy. So I’m left wondering, Who’s Zudu Labs? Where is the privacy info for the StudyMe Project? Can I be assured that my info won’t go to advertisers, marketing, medical corporations, etc? It seems like others will wonder too.
Linda Tanenbaum stated that the OMF will never share your contact information. This is apparently just between you, the OMF and the researchers.
i agree……….
Hi, I think there’s something wrong, I can’t complete the registration. On the page about which research areas you would be interested in— me/cfs, post viral infections, long covid or fibro.. it keeps saying “oops make a selection” no matter what I do and I can’t get past the page.
Have you tried selecting yes for the ones you want and no for the others?
Oh my gosh derp thanks. I needed to hit NO on the item I didn’t want. I was thinking it was select the items you want but I see now it says fill in line by line. Thank you !
In Germany, a national ME/CFS patient registry and blood bank is underway, too: https://cfc.charite.de/klinische_studien/mecfs_registerbiobank/
It currently receives government funding. In a first step, it will only encompass regional patients from the 2 centres specialised on ME/CFS in Germany (Charité Berlin/Scheibenbogen and Fatigue centre for children/adolescents TU Munich/Uta Behrends). They plan to later expand it to “further centres” whoever these will be. Things are still moving too slowly for ME/CFS in Germany. But I think a registry is a very good step as it establishes an institution and visibility.
great!!! thanks!!! if all the countrys would follow…
Is this international or just USA please?
International 🙂
Which one is international – the StudyME registry? I was assuming it was US only – if it is international they should best say so on their webpage.
Cardiovascular and haematological pathology in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A role for viruses
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10027292/
This study published in July 2023 represents a comprehensive overview of ME/CFS and Long Covid both from the standpoint of affected body systems to viral etiology particularly herpes viruses in ME/CFS.
This is a long dense paper and one that Cort should feature in a blog with the GIST for those with significant brain fog.
Why wait for years for registry data to be collected when research like this is available now?