DecodeME March Webinar
40:26
7 ай бұрын
Thank you video
1:19
8 ай бұрын
DecodeME WEBINAR December 2023
1:00:16
DecodeME Webinar 12 October 2023
1:00:34
DecodeME Webinar: November 2022
57:06
DecodeME Webinar   Science Behind DecodeME
1:04:02
DecodeME: January 2022 webinar
57:13
2 жыл бұрын
DecodeME MEAwareness Week 2021
0:31
3 жыл бұрын
DecodeME April Webinar
37:55
3 жыл бұрын
DecodeME Winter Webinar
1:00:07
3 жыл бұрын
Пікірлер
@chihuahuapixieprincess2482
@chihuahuapixieprincess2482 28 күн бұрын
Forever grateful - fed up with people sending me videos saying if I rewire my brain/thinking I'll be remarkably cured after 30 years.
@ryanneilcarr
@ryanneilcarr Ай бұрын
A couple of charlatans and scammers.
@owlsrace
@owlsrace 5 ай бұрын
I doubt if any of the BACME audience were converted to the truth about ME. They are all members of Wesselys psychiatric scam.
@FireflyOnTheMoon
@FireflyOnTheMoon 5 ай бұрын
I'm surprised that the graphs didn't show lung, heart or vision problems.
@EndersWorlds
@EndersWorlds 5 ай бұрын
Very interesting. I've found reading some of the bacme info online that whilst it's much better than what's often available info wise (outside of the charities), it does not always reflect my lived experience of ME, and what I've heard from others online too. And that's concerning given that these are people who are trying to be substantially involved with the education of our medical professionals, for them to have fundamentally misunderstood something as important as PEM, for example, is very worrying indeed. The only thing worse than medical professionals knowing nothing about ME, is them being taught things that are untrue or inaccurate! And then going forward thinking they know better than the patients, and dismissing us because they've 'had training' and so think they fully understand the condition. Let's hope this information reaches the well meaning people involved in bacme so they can correct this.
@maxnits9556
@maxnits9556 5 ай бұрын
Hello from a patient in Ukraine! Thank you for doing this important work!
@beckster6116
@beckster6116 5 ай бұрын
Awesome to see the start of the data flowing from this research. Thank you for keeping us updated.
@belindaj1953
@belindaj1953 5 ай бұрын
I'm really surprised that headaches/migraines weren't on that list
@beckster6116
@beckster6116 5 ай бұрын
Headaches was on the image called “Shining a light” - it was on the predominantly female side.
@belindaj1953
@belindaj1953 5 ай бұрын
@@beckster6116 Thank you I didn't see it!
@wplno1
@wplno1 6 ай бұрын
Keep up the great work everyone, and please complete your steps if you were invited to do so.
@gillianharper-ward7877
@gillianharper-ward7877 6 ай бұрын
THANK YOU 😢😢😢😢😢😢😢😢 I'M CRYING BECAUSE IT FEELS LIKE SOMEONE CARES. X I'm sorry I didn't know about the second questionnaire, I would have loved to have helped. xGx❤
@hypernorm4802
@hypernorm4802 6 ай бұрын
Thanks. Your communication really helps me keep the faith.❤
@Allyphant2909
@Allyphant2909 6 ай бұрын
Thank you for all that you are doing. We are so grateful. Keep up the good work.
@andrewgifford7740
@andrewgifford7740 6 ай бұрын
Great progress - in the face of non-trivial complexity and logistics - thanks for what you're building, it's going to be a really important resource!
@r.1599
@r.1599 6 ай бұрын
Thank you so much for researching ME/CFS. Although the most recent study I read finally definitively says ME/CFS is biological illness, not psychological, we all know that getting funding for this illness (or even finding people who are willing to research it) is incredibly difficult because it is still thought of by many as an "It's all in your head" thing. So *Much appreciation and gratitude* to you for doing this study. I am not in the UK, so not able to participate, but I am cheering you on.
@r.1599
@r.1599 6 ай бұрын
Sooooo looking forward to the results. I hope they include all possible triggers of ME/CFS as I suspect there is more than one road that leads to this destination. Perhaps, though, all possible triggers are triggering a single cause (for example, mitochondrial weakness) or a limited number of causes that result in ME/CFS; that will hopefully make it easier to treat a variety of ME/CFS. I think that although we are realistic people, we are all _hoping_ for a full reversal of the condition.
@elizabethsharp8699
@elizabethsharp8699 6 ай бұрын
I have lately learned about the fascia’s that cover every part of the body and wondered if something going wrong with this web that goes everywhere in the body could be involved in ME I have had plantar fasciitis and it was very painful and Wes. Eventually cured with an injection of cortisone , I am one of your group I have ME and fibromyalgia lve had it for 27 years l am so pleased you are doing this good work I at last feel cared for doctors haven’t been at all bothered when you try to explain how it feels to have it ,thank you for all your hard work there are five people in my family who have it .
@Minaretfm
@Minaretfm 7 ай бұрын
Thanks for the insights so far into this fascinating study. We all live in hope of identifying possible causes and therefore a treatment plan for this hidden disease that has ruined many peoples lives.
@jennyfurber9912
@jennyfurber9912 7 ай бұрын
Thank you all for this webinar which I wasn't well enough to watch on the day but the information I've now heard fills me with a great deal of hope. I know you have all worked and are working really hard for this project especially through some hard times you have had, but everyone who is involved including us ME participants want to thank you so very much for all you are doing. 👏🏻👏🏻👏🏻👏🏻 ❤
@mrsretnac2150
@mrsretnac2150 7 ай бұрын
I really pray that you are able to find substantial evidence that will eventually help all those suffering from m.e. My gratitude for all your hard work. Please keep it up 👍
@peacekeepermoe
@peacekeepermoe 7 ай бұрын
18:00 Thank you for the hard work everyone. I hope Dr. Ron Davis (Stanford geneticist - father to Whitney Dafoe) gets access to this valuable data so he, and his team can analyse it as well. The more, the merrier as they say.
@MRAIDANGWALSH
@MRAIDANGWALSH 7 ай бұрын
Another thing that comes up is Fabry Disease I thought this was tied to BH4?
@MRAIDANGWALSH
@MRAIDANGWALSH 7 ай бұрын
Ron Davis from OMF mentioned likely as a probable cause in his seminar the last one in London in ME/CFS was BH4 Deficiency. Maybe this ties to folate Folinic Acid? He also mentioned as many as 50% have ME/CFS with MS by doing some pcr antibodies I think x x
@MRAIDANGWALSH
@MRAIDANGWALSH 7 ай бұрын
Was anything showing on any findings with BH4 Deficiency? Folate genetic mutations? (HFI) Hereditary Fructose Intolerance? EDS genetic types?
@Parianparlay
@Parianparlay 7 ай бұрын
YOU are all totally brilliant……thank you thank you for all your work, from a 35 year M.E. patient! 🙏🏻💐👏🏻👏🏻👏🏻👏🏻
@greigsanderson
@greigsanderson 7 ай бұрын
Remember to like, subscribe and share. ❤
@MissiBoo
@MissiBoo 7 ай бұрын
I have found this webinar very helpful and thank you for this. This is a positive step for all people who have ME. Hopefully, it will produce the desired outcome and more understanding of this awful debilitating condition. I am looking forward to the results.
@FireflyOnTheMoon
@FireflyOnTheMoon 7 ай бұрын
You should have made it clearer that Decode DNA might find no DNA patterns for people with ME at all and no drugs that can help. This is one very possible outcome of the project and not a failure. You can't possibly give any guarantee of what the project will find.
@FireflyOnTheMoon
@FireflyOnTheMoon 7 ай бұрын
I appreciate that you have given all this info but I don't think you have to explain the details of why things were delayed. It's normal for science projects. It's good that you got more funding. It's not your fault. Don't feel guilty or bad. Participants should let you get on with your work and appreciate that Decode ME is happening at all.
@EndersWorlds
@EndersWorlds 7 ай бұрын
Thank you so much to everyone working for this study. Sending you all enormous gratitude 💙💐
@noodles4822
@noodles4822 7 ай бұрын
Thank you for being open and honest with us.
@jaynesierakowska3120
@jaynesierakowska3120 7 ай бұрын
Thank you for all your hard work ❤
@maxnits9556
@maxnits9556 7 ай бұрын
I thought you were going to analyze all the data for 4 more years, no? All 20k samples or something? If it's August next year - it's actually amazing! Or is it just for preliminary findings?
@FireflyOnTheMoon
@FireflyOnTheMoon 7 ай бұрын
The highly personal and intimate approach taken by this project has been interesting to watch, having been involved with many medical studies and trials for decades. I do wonder if in this case the warm and cosy approach has been a mistake. Decode ME is a science project only, with scientific goals and procedures. Many participants seem to entirely misunderstand the aims and methods and point of the project. If some people have not been chosen for processing they are taking it as some kind of insult. If there is a delay (perfectly normal) they express great personal disappointment. There seems to be a general impression among participants that Decode ME will find some kind of DNA markers for ME. It's crazy that this far in so many people still don't seem to understand what the project is for. Even if some kind of DNA patterning is identified, that's not to say science will be able to do anything about it - or find a cure. As someone with ME, I do understand desperation to find answers, but this project is just science - one study in a thousand studies. Don't get upset with or insult the co-ordinators for running a science project. This is a process of decades, not months or years. We must have reasonable expectations.
@EndersWorlds
@EndersWorlds 7 ай бұрын
Hi, with respect, I think you maybe misunderstood where people are coming from for much of that. People are disappointed because this is a long overdue study that is a very large and extremely well planned study design, that is highly likely to yield very definitive answers around whether ME has a genetic link, BUT ALSO what areas of the genome might be involved - that could lead us to new areas of research or highlight existing areas that need to be prioritised with much better funding. That's a really big deal! It has the potential to change the entire nature of how ME is viewed globally, and enhance the argument for much greater funding whilst we're at it. There is MUCH to gain from this study. There may indeed be a negative outcome, with no genetic link found, but this is relatively unlikely since ME doesn't just run in families, it runs in family lines with some grandparent having ME, who has died long before their grandchild is born, and then their grandchild goes on to get ME also, this tells us it can't be environmental eg exposure to the same trigger or virus etc, because they're separate households, separated by many years, this strongly suggests a genetic link. So there is very good reason for us to have hope that a link will be found with this study. They almost certainly wouldn't havegot such a huge amount of funding for it had there not been a pretty good chance of a positive result here. And as I mentioned there is a lot else to be gained too from it. So I can understand why people will find this a tense wait wondering whether it will fulfill our hopes for it. The researchers too I would imagine. It's only natural. This isn't any old study, this is a particularly important one, it's very large for starters - which is unusual, I imagine you already know that, in ME research, larger studies have way more potential to find meaningful results that move things forward - especially true in a GWAS piece of research. I think it's absolutely appropriate for everyone to be very excited about this particular study, it really could change things substantially moving forward. The chance that it doesn't show a genetic link at this level of participation, is exactly what makes everyone nervous in the first place. It just makes it feel more high stakes. So I suppose that's why we are on tenterhooks until the results are here. The comments are almost all very respectful towards the researchers, most people do understand why science can take a while I think, although not everyone always has a great understanding of exactly what it takes, it's just a misunderstanding of how science is carried out though that's all.
@sandrachamberlain5760
@sandrachamberlain5760 7 ай бұрын
Thank you for update, disappointing yes, but I'm really glad study is being done thoroughly and am grateful to the team and all involved and the sponsors. I've always thought that this study will help future sufferers and unlikely to help me in my lifetime, but live in hope. Hope all goes well and look forward to next year and any updates you can give us meantime.
@user-lu8hl3bg4x
@user-lu8hl3bg4x 7 ай бұрын
What an utter disappointment! I was counting down the days.....that's a huge delay. I guess messing up the initial criteria for participating in the project didn't help matters. As soon as I heard the fawning - thank you, you are all amazing - it didn't take much working out to realise what was coming next. Surely you must have known about the possible delays sooner, the original deadline was just 6 months away. Massively disappointing. I think I'm done with this project - I need to put it out of my mind. Too much disappointment throughout this process, and who knows what's to come.
@FireflyOnTheMoon
@FireflyOnTheMoon 7 ай бұрын
Counting down the days to what? The project has not said and cannot say that they will find any definititve results. One outcome might well be that they find zero DNA correlation with ME. I think you misunderstand science trials, and science.
@user-lu8hl3bg4x
@user-lu8hl3bg4x 7 ай бұрын
......to the findings, whatever they may be. I haven't misunderstood anything. I'm just disappointed. This is, after all, a platform for comments.
@greigsanderson
@greigsanderson 7 ай бұрын
Pretty obvious this would happen from the outset, Everything was taking far too long.
@EndersWorlds
@EndersWorlds 7 ай бұрын
Ah this is really disappointing, of course. But still really appreciate everything you guys at decode ME are doing, good science takes time, and big projects often have delays so I understand. I know you all understand us ME patient's and how desperate we are for answers. I know this delay must be totally unavoidable. You guys always seem to really do your best, so thanks. We'll look forward to seeing the results when they do arrive.
@FireflyOnTheMoon
@FireflyOnTheMoon 7 ай бұрын
You maybe desparate for answers but all this study might well show is that there is zero correlation between ME and DNA. Anyone involved in this project to get resolution for their ME is in the wrong project and does not understand the science.
@FireflyOnTheMoon
@FireflyOnTheMoon 7 ай бұрын
One perfectly reasonable result of the project would be to find that there is no DNA relation to ME at all. This would progress the understanding of ME. People should not be disappointed by finding no clear correlation or distinct patterns uncovered. There should be no pressure on the scientitists to find something that isn't there.
@EndersWorlds
@EndersWorlds 7 ай бұрын
@@FireflyOnTheMoon I agree, but I'm a little unsure why the comment is aimed at me, I have never expected anything except the knowledge that will come from whatever the results of the study might be. No-one is putting any pressure on the outcome, least of all me, I mean it's science, it shows whatever shows, that's the nature of the beast....the attempt to establish truth, whatever that ends up being. The result will be an answer one way or another.
@trudymcgrath992
@trudymcgrath992 8 ай бұрын
Thank you for everything and to everyone who is making this happen.
@alibabba6219
@alibabba6219 8 ай бұрын
Thank you for finally getting the funding to hopefully discover the naughty part of our dna causing this horrible illness. I’m glad I was selected to participate cos I wouldn’t wish this on my worst enemy and hopefully the results will help us to get our old lives back. I miss my independence and hope someday I’ll be able to get a job and be able to live my best life without medication, pain and suffering xx and to not have to let my son down when we’ve made plans and on the day I absolutely cannot even get out of bed to fulfill our fun day. It’s heartbreaking. He’s only 6 and I’m soooo lucky that he is my son but I feel like he deserves sooo much more than me being his mum at times cos he doesn’t understand why mum can’t stick to the plans or why mum is in bed and then when I get the energy I try to make up for it and get pem proper boom and bust. Got gastroparesis now too so waiting for the day in the next few years when I’ll be getting a PEG feed
@jaynesierakowska3120
@jaynesierakowska3120 8 ай бұрын
Thank you team. We need help.
@hypernorm4802
@hypernorm4802 8 ай бұрын
…and thank you so much ❤
@maxnits9556
@maxnits9556 8 ай бұрын
Chris and the team, you guys rock!
@belindaj1953
@belindaj1953 8 ай бұрын
Thank you for looking into M.E
@wplno1
@wplno1 8 ай бұрын
As someone who participated in every step of this survey, I would also like to thank the people like those in the video and behind the scenes for dedicating their time and efforts into helping people like myself. Here's hoping for some kind of medical discovery or at least something that helps with this condition.
@alibabba6219
@alibabba6219 9 ай бұрын
When I first heard about this project and filled in the first questionnaire I thought with the complexity of how my m.e came to me I didn’t think I’d ever be a candidate for the spit kit test but I was so glad when it came through the post……. And I am proud of myself for actually getting it done and sending it back cos I wouldn’t wish this illness on my worst enemy xx
@alibabba6219
@alibabba6219 9 ай бұрын
I worry about my son he was born when I had severe symptoms and he is 6 now and I bother when he says he has pain in his legs… he was diagnosed with autism at 2 years 9 months… never claimed dla and now his school are trying hard to get me to get the benefits for him as I am entitled to them but I am his mother and I will continue to support him and care for him but if he’s getting dla then the school will get extra funding?? Don’t know what to do now I haven’t claimed it in 3 years since diagnosis but feel like I need to now
@alibabba6219
@alibabba6219 9 ай бұрын
I’ve just been diagnosed with significant gastroparesis and wondered if it was to do with my m.e?
@FireflyOnTheMoon
@FireflyOnTheMoon 10 ай бұрын
I don't understand why people were getting upset on not getting included. It's a science study - they give criteria - they use the data or they don't. It's not remotely personal. The remit of the study is clear. The parameters are clear. Participants should be prepared for the study to show no genetic links at all.
@greigsanderson
@greigsanderson 10 ай бұрын
Please, please, please send back your samples, the more DecodeME get, the better, lets end this a.s.a.p.
@wplno1
@wplno1 10 ай бұрын
Thank you for your efforts. Disappointing that so many saliva kits have not been returned as that's valuable data for this study. Please send them back. Did mine and it was very simple, if you are not able to pass it on try and ask a helper to drop it to a post box for you.