DecodeME Webinar 12 October 2023

DecodeME webinar from 12 October 2023 with Sonya Chowdhury , Chris Ponting, and Sian Leary
This webinar updates on the study's progress, some preliminary findings from initial questionnaire analysis and includes a Q&A session. A full transcript is available on our website at decodeme.org.uk
Timestamps:
04.35 Agenda
05.05 Objectives
16.24 Project Timeline
18.49 Initial Questionnaire Analysis
21.25 Recruitment update
26.16 Key Deadlines
27.56 Q&A

[@wobblydogcreations2521]

Thank you so, so much for your research into this absolutely life limiting disease. At 52, I'm aware that a treatment may not be available to me in time to stop old age just taking over where ME left off, but to know that future generations may not have to suffer decades of pain, disability, loneliness and being met with suspicion and disbelief is awe inspiring. Your work will affect millions of people in such a positive way. So thank you again, and im so excited for august 2024! Xxx

[@karenburdett7571]

I have been in tears at times watching this video. Tears of hope. I thank everyone from the bottom of my heart for your hard work and dedication in trying to get to the bottom of this awful condition in order to find a treatment or cure. There are no words to describe how grateful I am 🙏

[@judebrown4103]

Thank you all of you for the work that you are doing. Thirty five years of self management, awful cognitive problems, pain, fatigue, PEM and now some really frightening new cognitive bewilderment that finally got gp attention. Had an MRI last week but "all is well" I'm not having TIA's, waiting to see if gp remains more interested than neurologist or if yet again I'm left on my own to cope with a worsening scenario. Meanwhile the trauma of the noise in the MRI and the utter lack of care afterwards, including my walker being moved away and out of sight, not even helped off the bed or returned my glasses to me, I'm physically worse than I have been for ages to the point that even I can see how ghastly grey I am in the mirror. So thank you and the Physios for ME for keeping a light shining which is preventing me from goung under. 👍🙏

[@saa1094]

Thank you all for the research you all are doing. 30+ years with this disease… did not think I would still be alive now, to be honest. For the first time, I am really hoping answers and effective treatment will be available sooner rather than later. 🙏🏻💙

[@diannewilliams1585]

Yeah, me too. I totally relate. It's such a relief that we have some dedicated scientists working on it now. Thank you all.

[@greigsanderson]

30 plus years? Omg, I'm just over 4 years. That's horrific. Hopefully we get a cure and you finally get closure, and get to live your life like before. Greig

[@greigsanderson]

The last weekend to get involved in this study. Please, please, please do so. I have, but the more they get, the more likely they'll find a cure. ❤

[@susannahbaker8469]

This is such fantastic work, thank you for exploring ME more! 18 years into this illness and still suffering. There's definitely a genetic link because it repeats in families. Can't wait to find out what it is and how to cure it. Thank you.

[@gabilopez1324]

thanks from Spain. I will see in next days. Thanks for working for pacients with ME/CFS and give us hopeness!!

[@jackson2uk]

Thank you for all the work you have done and will continue into the future. Also thank you for admitting you made mistakes, too often with ME it's the patient who is told that they have made a mistake - your not exercising enough, you need more will power, you need to tough it out. Its very refreshing ! I hope that you get the data that you want which will lead to a better understanding of these illnesses.

[@katgillespie9523]

Thank you for doing this work. Life often feels hopeless with this disease

[@nievessalazar7639]

Thank you for giving me hope. I am part of the DNA study. But as a Retired Scientist I hope one day that the DecodeMe team will have an answer to this dreadful illness. I have been diagnosed five years ago. I was very active but has been certified recently as now disabled. Thank you once again for all your hardwork.🥰💐🙏🏼

[@Tealover645]

Thank you so very much from me. I am one of the people who thought they had “recovered” and so it was a massive shock when it returned 30 years later and with hindsight can see it had not fully gone but caused milder symptoms in the intervening years.

[@perranmaid]

Similar story

[@lisakeell7343]

Me too, started in 1984 and not diagnosed until 1988 , then it comes and goes so I think it lies dormant for a while until you are run down again and stressed! Best to you hang on in there!@@perranmaid

[@MP-uo6qd]

Try taking thyroxine and B12

[@brokenbeautychinelonwaenyi6776]

Thank you so much for this research, efforts and resources you are putting into this for better tomorrow. Thanks to those of us that contributed our datas (spittle) for this. I’m willing to do more too I have been suffered from this condition for over 25 years! We are hoping for a change/cure and I’m seriously hoping that it happens while I’m still here. God bless you all💙 🙏🏽💙

[@EndersWorlds]

Just like everyone else here I am just so grateful for this study! The quality and effort that's gone into making sure it's really meeting all the things it should, crossing all the t's, dotting all the i's, it's wonderfully reassuring. Can't wait to hear the results when they come. Thank you for doing such a good job. Whatever the results are they will be useful in one way or another, but here's hoping for something really clear and dramatic that points researchers in a nice distinct direction! X

[@TilmanAndris]

Thank you for all you do!

[@Frostyleo21]

thank you so much for working on this!

[@andreadenny4833]

Cant thank you enough for doing this study, and also for your diligence in making this a truly scientific study, and following correct procedures. We all know what a disaster it can can cause ordinairy people when a study is not handled properly.For so many of us research into me is the only hope we have of beating the illness. I really believe in this project . im keeping everything crossed in hope that decode me will find good information that will help us fight me. I know it may be a long process but i really think that genetics do play a role in me/ cfs.Thank you so much from a severe patient.

[@pamelabishop1793]

28th year with this illness. Its now left me housebound. Hope this changes things.

[@steve45678]

Same as yourself, terrible illness.

[@Parianparlay]

Me also..35 years now, it’s a really weird illness, so hope that DecodeME can help us all.

[@orionhale788]

I had a diagnosis from Dr Weir. He gave me a list of supplements that can reduce symptoms - - Bicarbonate soda (food grade, half gram daily) - Vitamin D 2000 UI daily - Vitamin C 500mg - Zinc Citrate - Flushing Niacin 100mg (take lying down and consult doctor first. Take daily for 3 months. Be aware can cause liver damage if higher dosage consumed) - Supermalt drink (B12, B6) helps me - algae chlorophyll tablet - every few days - my findings - green tea and peppermint tea helps digestion - a Brazilian nut a day - Selenium good for immune system or take supplement Selenium 50mg a day. Nattokinase - helps to prevent micro clots and used by Japanese for longevity.

[@michaelburns1212]

Thanks for launching the program, long overdue and looking forward to seeing your progress. Would love to see real evidence from the data and see how my profile compares to this. 23 years now living with ME.

[@steviemcknight6295]

Glad my samples were helpful, really appreciate this research, hopefully we shall have a positive outlook and a greater understanding for sufferers of ME and more importantly the medical professionals.

[@MP-uo6qd]

I recovered from PVFS after 16 years but I don't know why. I had some sort of relapse a couple of years ago though (tremor inside me feeling, fatigue, myclonic jerks and some PEM) and so I took 1000 mcg B12 and it seemed to disappear a few weeks later. I can't prove it was the B12 and I stopped taking it but so far I am OK. I hope this study produces results showing thyroid and B12 pathways are disrupted somwhere.

[@fabiocecchinato5977]

So happy for you ! Was the B12 with injection ?

[@MP-uo6qd]

No, sublingual. I can't prove it was the B12@@fabiocecchinato5977

[@jemmacarlin5164]

Thank you for all your work. Ive only been living with this for 2 years and its been a rollercoaster. I'm hopeful that you might find a treatment or cure. It's one of the most understood and discarded diseases that change your whole life. Thank you again.

[@georginacambridge3857]

Thank you so much. Im glad my sample was useful.

[@peterhealy9044]

Thank you. Just thank you

[@sherri5134]

Had now since 2008....but from 2017 severe. Now have carer twice a week after hospital admission, can't afford more than twice week. Sadly for me I know this will never be reversible.....I just want to stop feeling exhausted, barely living but more than that I want to be believed and for the medical world to accept they let us down by not doing enough sooner

[@wattsizname]

Someone asked if animals would be included! I don't know of any animals that have ME😳🤔 Anyhow thanks for all the hard work. Looking forward to some positive results... finally👍🌻

[@barkingmaddy]

Perhaps they were asking whether any testing of possible drugs would be tested on animals 😊

[@wattsizname]

@@barkingmaddy oh I see! That's probably it... although with my sense of humour, the original thought was funnier!😎😄 cheers

[@MRAIDANGWALSH]

I forgot to mention that some with ME/CFS/EDS 3 or ME/CFS/EDS-HSD have crossovers like one is Tenascin X & some have Classic type or EDS 4 instead...

[@alicebarford9590]

I haven't received a spit test.

[@anthonyscullion3759]

Should have been a FAQ update with 2 graphs saying results will be issued in August 2024 not an hour long video. Extremely repetitive. A waste of my energy.

[@Mark-gp4yn]

Not happy. I was told we would be told the results of the first 5000 samples ( summer 2023 ) rather than wait until the study is finished. Secondly, this study will take several more years to complete. Again, lied to. Anyone that thinks the study will be completed by August 2024 is living in a dream world. Delay after delay after delay. They are not being honest with us.