I just discovered your podcast - thanks to its fabulous name which caught my attention on Instagram - love the creativity and wit! I appreciated your Patreon launch episode because as a blogger (18 years!) and RU-vidr, I've been considering Patreon, too. I look forward to listening to/watching more of your episodes. Nice to "meet" you both!
I’m new to your channel and enjoyed this program very much. It was profoundly helpful and relevant to the struggles of ME/CFS . Support groups are available in US for grief dealing with this illness, however I believe it may be costly…
Thank you so much for sharing your story with us Jeff, and for such a well thought out interview Daniel. Your remarks really touched me with so much food for thought. A beautiful soul in our ME community, sending love, light and spoons 🩵
Thank you Daniel for having Jeff on your podcast. Jeff continues to show positivity and strength in-spite of his situation. I love my brother and I am so proud of him. I wish for everyone who is dealing with this terrible illness, ME, to see the inspiration that my brother has given to so many. His kind heart, his positive outlook and the people that he has touched are so much better off having known him. He is my inspiration. ❤🤗
Thank you Daniel for having Jeff on your podcast. He is an inspiration and I appreciate you giving him the opportunity to touch even more lives with his positivity and the strength that he continues to show in-spite of his situation. I am so proud of my brother and I wish the best to all who are dealing with this terrible illness. ❤
I'm so sorry about your cancer. Thank you for sharing your story. I'm facing the end zone too so it's helpful to hear others who face the end with dignity
Thank you for what you do. If you can and want more views, I recommend posting these videos in me/cfs communities on Reddit and Facebook. Shorts are also very effective on TikTok, Instagram, Facebook and here on RU-vid. I do social media work myself and it’s very challenging to keep up with, but posting daily shorts is very helpful to the algorithm on a lot of these platforms. I take breaks a lot but hope to one day be able to manage it better.
Hi from Australia and thx so much for the vlog. As a writer I found this so helpful as a writer I get so down when I'm unproductive ( which is often ). Blessings
This is something I needed! Hearing her talk about not having the vocabulary to explain or even understand ones own symptomes and experiences really hits home. Even this episode helped me expand some of my understanding and vocab about the very topic. I've always known I don't buy into the "change the way you think to get better" sentiment, but learning more about it here has helped me remove little doubts of my own experience and put it more into words. So thank you, Dan and Eliza!
Thanks Oonagh and Dan! Great to hear Oonagh’s story and so much thoughtfulness and insight throughout. And lots of important themes all coming together here-acceptance/tolerance of one’s illness, respect for the reality and people’s experiences of long covid and ME, medical gaslighting/ “recovery” gaslighting, fuckery of toxic positivity, chronic illness grief, trying to find/create meaning moments or kinds of joy when possible…💜💜💜
It makes me wonder who the lightning process has been helpful for. Perhaps good if you’re training as a healthy able bodied athlete for example so the NLP Positive Mental Attitude works there perhaps. I still have videos of myself doing this when I was so so desperate to get better. Yes I relapsed a month or two later 😢
@@Post-ExertionalMayonnaise THIS is exactly what is missing from the narrative! I hope you all at Mayonnaise folks can eventually feel well enough to do interviews with compassionate mainstream journalists. You elevate the discourse.
I'm sorry about your relapse. It's a testament to your courage that you tried, even though LP turns out to be "problematic" to say the least. It's ironic that we ME/CFS people are so desperate that we try anything while simultaneously being blamed for not trying 🤬
I also think that if someone does 'brain retraining' at a time when they just naturally happen to be going through a period of improvement, they ascribe that improvement to the programme. So people can genuinely believe it has helped them when really it was just coincidence. (The whole reason that proper research methodologies are required)
I remember looking at LP years ago (maybe 2015/16) and there was a big red flag (which led my to look deeper than their website reviews). I had to believe in it before I could be accepted in the program. How could I since I didn't really know what it was? If you don't believe, it's not gonna work. That was the idea. Aye right...
Great episode again. Indeed, we can't treat pathophysiological issues with mental health support. Very true that we need to learn to listen to our bodies, as opposed to learning to ignore symptoms. Ignoring symptoms is often the 1st thing we do. Pretending isn't helpful (neither with mental health by the way). It leads to worsening.
Thanks Stacy and Dan! A beautiful interview, heart breaking as well. The medical incompetence and neglect is staggering (though I know most of us have dealt with some similar stuff.) Love 'The ME Scandal'!
I think we all thought we were the only one. Wow so insightful to hear this view point and yes of course taught to gaslight ourselves it’s so blatant and sinister isn’t it! Thank you both for another brilliant podcast video with such amazing clarity and relatable content for so many of us. F ing ell finally TV I can relate to where I’m seen!!
It’s still under psychology here now too as only thing available to me just recently when I asked if anything new is just CFS clinics within dep of psychology
That familiar denial after a period of remission is so relatable. I mean I did my degree, became a lifeguard and then qualified as a dance teacher but for the third time this thing got me: Glandular fever age 16 = one year recovery then ME diagnosis 1995 age 20 approx- then major relapse age 34. Having the rug pulled under for the third time heartbreaking. Awful systemic abuse we’ve all endured. They owe us A LOT
Excellent episode, thank you both for your thoughts and experiences . I really enjoyed your song Mama Chill and I’ll definitely be listening to more. It’s empowering that you’re able to tell your story in such a creative way 🩵
Don't laugh at the poo treatment so easily. My son and I both had it and it's been amazing, even my eyesight improved. It's not a cure as getting things like covid can cause relapses. It's also expensive but is the only treatment that has ever made a difference to my ME in 34 years. Invest in ME are doing a large research project into Faecal Microbiota Transplant.
I wasn't laughing because I don't believe it doesn't work for some people Rose , it was more because you've just got to keep a sense of humour with all these things, and I know alot of peoples first reaction was to chuckle when they heard about it, I'm the same as you in terms of how long I've lived with M.E so i'm really glad it's working for you and your son, Yes & Invest In M.E were looking at an initial trial into Red light therapy & if it went well they were going to fund clinical trials, which i thought was very interesting? 🙏💜😎
@@Mamachillmusic I was initially going to write: don't poo poo the poo treatment so easily. 😂 It's only a sense of humour that keeps us alive. I'm so sorry you had such an horrendous time. I had an amazing GP in 1990 who diagnosed me straight away a sent me to a wonderful psychologist, not because he thought it was psychiatric but to help me cope with living with it. My son then got it too 11 years later when he was 21. The lack of research, the files hidden away from us by the government until we're all dead and Simon bloody Weasley are a disgrace. I also had a bad reaction to the "happy" pill. Take care.
@@rosespritemardon3169 🤣, wow, that's rare to have such good care in the 90's almost unheard of, but thank god you did & your son too,. Don't get me started on Wessley , I make reference to him in the song " Get down off your cross, lay down your crown, give back the award, there's a real god in town" in reference to the fact he was bloody knighted for all his supposed work on M.E ? More like damage to M.E sufferers? Grrrrrrr! 😎
Yes, I got the reference in your song. His wife, also allegedly a doctor, got covid and said she didn't know fatigue could be that bad and debilitating. He's done more harm to us than anyone else on the planet which is why I call him Weasely. He's the only person in the world I'd like to see get it. I want to meet him and say if it's all in my mind would he donate 2 pints of blood to the blood bank then accept 1 pint from me to make up the shortfall?
Great interview, Daniel. "Three weeks later the hospital phoned...'we noticed you're missing.''" IN FACT it is the medical world that has been missing pwME for over half a century.
Thank you both for this interview. It must have been exhausting to talk for so long! However, it's important to tell and share our stories. It's important for others to understand the abuse, neglect and never-ending battles that people with M.E. face.
Thanks for this interview & for your art. Art connects us on both intimate & universal levels. I have come to believe that the ME scandal was practice for the Long Covid scandal.
And thank-you too, At least if there's anything positive to come out of all this, the communities coming together have made us bigger , more supporters, more campaigners, this is only going to serve us going forward 🦾x
Years and years of psychologicalisation as a person with Myalgic E, prescribed a cocktail of antidepressants having to cut up pills to get off them and weight gain. Finally after 16 years now just about get by on zolpidem and now have medical PTSD/N as a result of years of gaslighting. Health profession has given me more problems not less. Absolutely disgusting and CHANGE and investigation needed into esp women’s health and the ABUSE of thousands of us. Thank you for sharing your story and for shining yet another light on this atrocity and abuse of power in health settings. Get those dinosaurs out of our health system. F ing AWFUL 😞 Can relate to the terrifying feeling of paralysis as I was when severe with M.E.
Thank-you. So sorry for what you've been through and are still going through. Yes I no longer have anything to do with medical settings instead managing everything myself, apart from not trusting anyone, as you say they often make things far worse. The only plus to come out of the paralysis situation was that it made me more understanding of those disabled in vegetative state, I often wonder if they are fine inside and can hear and understand everything, so I talk to those i meet as i would anyone else now. As for the health system, you're also right, it's jurrasic especially when it comes to M.E, that's why we must keep on campaigning. 🙏💜😎x
Absolutely right we will keep talking about this and campaigning until things change. It’s unacceptable. And yes the positives are that it has taught me much empathy, respect and more understanding for those who are in a permanent paralysis, amazing Paralympians and those with MND for their minds are tested to the limit.
Susan here (Phil's wife here). I found the "ME Scandal" Rap song during the #GreatestMEScandal twitter campaign. I felt like the song was speaking to everything I was reading under that hashtag as well as my own experiences of neglect and harm. I relate to a lot of what has been shared in this interview.
Thank-you, it's the reason I write, I know myself from in the beginning of my M.E journey, there was nothing and nobody and it felt so scary & isolating, then i discovered a charity, there was only one at that time but there were people just like me, saying the same things and just being able to relate made a difference. I'm so sorry that you too have been at the receiving end of M.E abuse. We will all make a difference 😥x
I know this is going to be a hard listen to for me and that I will need something to occupy my hands, so I thought I would do something creative while listening hoping that embroidery or bagmaking I mean what could possibly go wrong. Seriously we need brave people both to enable others to understand their lived experience but also those who will listen and then decide to act and support.
I hope you managed to do a little embroidery /bag making Tina without too many hiccups and it didn't distract too much? While i promised myself I wouldn't watch it, I actually did, but it was like listening to someone else's story, i think I've become so used to it over the years that emotionally i feel nothing, very weird indeed. Thank-you for taking time to listen to it. 💜x
Thank you, Stacy and Dan, for this interview. In any other context, unnecessarily withholding food from a sick person for four days would roll heads, or at least bring on a reprimand. Especially as Stacy had been diagnosed as hypoglycemic. But ME seems to bring out a certain sadism in the medical community, and not a small amount of misogyny, given the prevalence of female sufferers. Anger is a justified, response, IMHO. But we need a supportive army of abled friends, family and advocates, as sick people shouldn't be expected to tackle the battle by themselves.
And thank-you, You're right, but sadly it just isn't the case, maybe in time more healthy friends/family members and public in general will get behind us but we all haven't done too badly considering how far we've come, and even though some of the changes are minimal, they are changes none the less and the momentum can only keep growing. In my daily life & most awful relapses the thing that keeps me going is knowing that i am part of something much bigger and no matter how small we can all do out bit, even when someone shares a post they are contributing to the battle and change, it all matters💜x
I'm getting through this video and it was lovely to hear Mama Chill's music at the end, it's not difficult to listen to, it's chill and lovely...Mama Chill rocks! XOXO <3
I found it amazing to see the CDC post this: "Some people with ME/CFS might benefit from antidepressants and anti-anxiety medications. However, healthcare providers should use caution in prescribing these medications. Some drugs used to treat depression might worsen other ME/CFS symptoms and cause side effects." Finally, a federal agency acknowledging the harm potential after years of these psychiatric drugs being pushed and harming many ME patients.
What's wild is that a lot of those are used, off label, for treating rheumy pain, and using anxyolytics/depressants for other things can cause depressions, anxiety, and other issues. But if that's what they meant, they should SAY SO instead of implying that people just need their heads treated.
I had a dr. Very similar to this lovely man...full of credibility and other life qualities. Dr John Gerrard was so dedicated! He seen patients long into his 90s at his home. "They" ran him out of the hispital for trying to put people on elimination diets. He was the first physician in the world to give an allergic child a peanut and soon after inject the child with an epipin. I bet this man knew of him.he practiced in saskatchewan, canada
