Gary talks ME/CFS on national radio

On Thursday 28 February 2018, Gary was invited to be guest editor of an hour of BBC Radio 5 Live where he got to talk about ME/CFS and speak to interviewees and callers. An hour flew by. You can listen here: www.bbc.co.uk/programmes/p05zn3nz

[@suzanneainsley2414]

Thank you, please keep up the good work. This disease is so invisible and misunderstood. You are an excellent ambassador. Honest, open and real thank you.

[@SonicShamanka369]

Thank you for publicising this soul destroying illness and the issues around lack of diagnosis, research and treatment. It was really good to hear the program today. For a moment the isolation caused by being housebound eased.

[@zonkedclub7681]

That means so much. Thank you. Please continue to look after yourself.

[@blovethompson]

LOVE ❤️ IT! THANK YOU! I am still looking desperately for the best ways to treat it and how to gain the much need understanding, empathy, and loving help from friends and family.

[@PerryNorton_PanRight]

RIP Gary... I'm so so sorry I'm only just discovering you on the day of your passing...

[@sorayacarlinsky9383]

Hi Gary. Soraya here. I'm residing in South Africa. Thank you first of all for sharing ur story. I have a wonderful husband and kids together with fantastic parent's that support me since I was diagnosed in 1986. BUTTTTT I have friends and family that's not so supportive and look at me asif I'm an alien when I try and explain what I'm feeling. But since I listened to ur show....I decided to be kind to myself and just go to bed when I need to and stop over explaining myself. Thank you again.

[@charlottec8165]

Love your vlogs and thanks for raising awareness of ME/CFS

[@zonkedclub7681]

Thanks so much, Charlie C.

[@3fishesinatank806]

Thank you!

[@zonkedclub7681]

And thank you for watching.

[@gemmaeverson2767]

You did an amazing job. Keep it going! We need a British made documentary about it! Anyone in ItV who can make that happen? Love the idea of a podcast. What you did today has helped So many people. My husband included.

[@MegaSLawry]

Voices from the Shadows is a UK made film about ME. It is free to watch on Vimeo: vimeo.com/ondemand/22513

[@gemmaeverson2767]

MegaSLawry thank you x

[@snappleandcats2209]

I just listened to the podcast this morning and it was so wonderful. It's so good to see awareness raised in any form. I've had ME since I was 9 and I'm in America. If you ever want an American's perspective in a podcast, I'd love to talk, but either way, what you're doing is exciting. You and the documentary Unrest and all of our wonderful doctors and researchers looking into this make me more hopeful than I've been in my past 11 years of having this disease. I'd thought I'd always be known as the crazy hypochondriac, but things are looking up.

[@zonkedclub7681]

Wow. What a lovely message. Thank you. I’m seriously considering starting some podcasts. If I do, I’ll be in touch. All the very best. ❤️

[@m.e.cornelis9722]

Thank you ....

[@KnittingEmporiumDesigns]

First of all thank you for doing the show and raising awareness. My daughter is 14 and was diagnosed with ME last year. When you mentioned doing a podcast I immediately thought would you please? Especially on ME Awareness day 12 May it would be great if there was a podcast to maybe highlight all the things going on for example the All about ME Knitathon or other fundraising campaigns.

[@zonkedclub7681]

Thank you so much and hope your daughter is doing okay. Going to take some restful days to mull it over but I really like the idea of the podcast. It feels like a good opportunity.

[@lindaandpaulhending4589]

This is as good as the radio programme, thank you Gary. It shows the adrenaline keeping you wired but people don’t understand how the energy expended yesterday will take ages for you to recover from.Be kind to yourself and recover well.

[@zonkedclub7681]

Thank you so much. Yes, the adrenaline is still flowing. Was expecting a slump today but I’m unusually good. Suspect it’s not far off. Being very restful just in case!

[@paul2019monte]

I so appreciate your efforts to bring awareness ❤ I hope you didn't crash from this effort. Look after you

[@debmansbridge3923]

Hi Gary Thanks for your vlogs you explain ME/CFS so eloquently I have all the symptoms and some . I was diagnosed in August this year and still coming to terms with it I am unable to work at this time and can’t see that changing tbh when I try to work I relapse really badly which hits harder and longer so frustrating as I can’t help myself out of this illness 😖

[@XslaterboyX]

Thank you for bringing this dreadful illness to peoples attention. I have been suffering for 7 years and experience all of the symptoms you describe every single day. I have had great support from my doctor but as you will know there is no known cure. Please keep up the good work. I hope your efforts generate some financial support so that we can find a cure.

[@zonkedclub7681]

Thanks so much John. Wishing you all the best.

[@finnroohomebrewing1846]

Hello there Gary. Im 56 and cfs has been with me for nearly 5 years post developing stevens johnson syndrome an autoimmune response to medication. Only just found your channel yesterday . Very good explanation of the condition well done and thanks. I notice your videos are a year old so how are you getting on now? Cheers from New Zealand.

[@zonkedclub7681]

Finn Roo Hi Finn. Thank you. I really do need to record more videos! I’m managing to do one to two days a week of work if I rest even more the rest of the time - so there’s a small amount of improvement based on me being very careful and strict with myself. Sending best wishes.

[@finnroohomebrewing1846]

@@zonkedclub7681 yeah I totally get it mate. Ive found your blog site so looking forward to getting involved. Cheers catch up soon.

[@suzannethompson9261]

Me too

[@sleepyowl71]

I do appreciate your awareness raising efforts. However, though there is merit to raising awareness on what is ME,, over the 20 years of having this illness, I have seen many articles and listened to radio shows on people’s stories of living with ME but they have not been effective in getting authorities to step up to the plate and tackle this hugely disabling illnsss that affects so many. American journalist, ME advocate and author of the excellent book Osler’s web, Hilary Johnson. said recently in an interview that that individual stories of suffering with ME in the media have largely been ineffective. Focus should be on public authorities failure and at times wrongdoing in dealing with M.E. You have great skills and I hope you continue, health permitting, to advocate for people with ME, but please can you focus in the future on the psychs 30 year harmful stranglehold on this illness preventing large scale funding for biomedical research into this illness. The psychs theory on ME has been debunked but their false model of ME still dominates in UK clinical thinking on ME and in the corridors of the medical institutions. The scandal of what they have done, including their shoddy PACE trial, needs to be exposed if we are to have progress and get the funding and collective medical will to study this illness. Many thanks.

[@zonkedclub7681]

Thanks, Prue.

[@sleepyowl71]

Thank you for replying. I am grateful for you getting involved as I know there will be a cost to your health. I look forward to any future ME advocacy work by you. I should have said this is my mum’s account. I am Annabel. Wishing you good rest.

[@MegaSLawry]

Gary, please watch Voices from the Shadows - free to view on Vimeo. Also, Osler's Web is considered essential reading. The author, Hilary Johnson, has a website and is on Twitter. You really must learn about the history, imo, and after decades of abuse there is a lot of history to learn. I suggest reading/ informing yourself should be a priority before you lose the ability to read - something that blights the efforts of many sufferers/ campaigners is the loss of such cognitive abilities: vimeo.com/ondemand/22513

[@zonkedclub7681]

Thank you, MegaSLawry. I shall. Appreciated.

[@jaymiehu123456]

Gary and whoever can see comments I leave on the KZbin video, just want you to know I wanted to do some international corporation not just to bring "ME Awareness" before ME has taken everything from me. Question is what are we going to do after "Unrest" or "Forgotten Plaque"? ME patients are committing suicide and different symptoms come and go everyday. Can science save us before we totally collapse or how much longer we need to wait ?

[@zonkedclub7681]

Thanks, Jaymie. I’m trying to keep the faith and intend to do what I can to effect change. ❤️

[@jaymiehu123456]

Do u have the energy to do KZbin videos ? Millions Missing or bring on the Awareness it’s not gonna change anything. I wanted to do something before my ME gets worse or before I die. One by one strikes down when it’s gonna be the end? I know Dr. David and scientist are doing research to save us. All the answer is hang in there waiting for a cure. Well, I do not know what else to say or do.