Podcast: "It's Not All About ME"

I think this onversation with John is a very rich source of material, as others have noted.

The simple statement that the promotion of CBT and GET and the behavioural model is based on no evidence is so important.

The description of being unable to process input makes a huge amount of sense to me in mechanistic terms. It is as if the feed-process-clear function in the central nervous system is corrupted. Like not being able to delete dealt with emails.

That could have a very precise signal basis amenable to treatment if the signal was known.

Thanks, Jo.

That's interesting what you say about the processing both in itself and as a reminder of another consequence of their model and how it was adopted: they stopped listening to patients. I and others were saying these things back in the late 1980s.
 
Thank you so much @Itsnotallaboutmepodcast for these podcasts and @JohnTheJack for this latest interview. I was in the process of transcribing exactly the same excerpts that @Michiel Tack posted above, but he beat me to it! Those bits of the interview really resonated with me too. You really got to the heart of the issues John, and as others have said, you expressed it so well. I hope a lot of people will listen to the interview and learn from it.

Thanks, Snowflake.
 
Enjoyed listening to this brilliant interview. Especially liked your mindset regarding questions of blame, failure and such. Very important not to blame oneself, and also agree on how you deal with relations.

At last, it is both reasonable and right pointing clearly at the ones responsible for the devastating situations patients are dealing with in so many ways.

Thanks to both of you.
 
Enjoyed listening to this brilliant interview. Especially liked your mindset regarding questions of blame, failure and such. Very important not to blame oneself, and also agree on how you deal with relations.

At last, it is both reasonable and right pointing clearly at the ones responsible for the devastating situations patients are dealing with in so many ways.

Thanks to both of you.

Thanks, Peter.
 
Thank you John Peters for a great interview. "I just want to clear my head ... I just want my head to clear ..." resonates with me so much.

Cognitive limitations are what trouble and frustrate and limit me the most by far. I don't care about the rest either.

As luck would have it in retrospect, having had (presumably) gradual onset ME since I was in my late teens in the 1960s, I became a classical musician, majoring in two instruments, so it took up most of my days for many years, and until recently I was still doing it. (I've had to stop because of physical reasons - osteoarthritis, muscle spasms, neuropathy.) Back in my university days I had no hope of dredging up and expressing ideas for written exams so each year I rote-learned essays I wrote to cover all types of possible questions. My god it was tedious!! I could automatically dredge up a good answer for anything despite brain fog which was my biggest problem then too. In those days, in the music education faculties, exam questions barely changed from year to year. If I hadn't learned well enough and had to think at all, I was lost.

I don't know what it means, but I can 'think' about how to use my body/use of muscles etc. in fine detail at times to get the music results I want; imagine what I want the music I play to sound like in advance so that physically and emotionally I'm ready to do it; all at the same time as reading and interpreting the music notes and instructions on the page and following verbal instructions as well. It's constant problem solving and is effortless, presumably because it is non-verbal. Playing music has allowed me to "be in this world" in a sense.

That's as far as my foggy state allows me to think about it so far.

Added the bit about exam questions being predictable in the olden days. I hear things have changed since then!
 
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Thank you John Peters for a great interview. "I just want to clear my head ... I just want my head to clear ..." resonates with me so much.

Cognitive limitations are what trouble and frustrate and limit me the most by far. I don't care about the rest either.

As luck would have it in retrospect, having had (presumably) gradual onset ME since I was in my late teens in the 1960s, I became a classical musician, majoring in two instruments, so it took up most of my days for many years, and until recently I was still doing it. (I've had to stop because of physical reasons - osteoarthritis, muscle spasms, neuropathy.) Back in my university days I had no hope of dredging up and expressing ideas for written exams so each year I rote-learned essays I wrote to cover all types of possible questions. My god it was tedious!! I could automatically dredge up a good answer for anything despite brain fog which was my biggest problem then too. In those days, in the music education faculties, exam questions barely changed from year to year. If I hadn't learned well enough and had to think at all, I was lost.

I don't know what it means, but I can 'think' about how to use my body/use of muscles etc. in fine detail at times to get the music results I want; imagine what I want the music I play to sound like in advance so that physically and emotionally I'm ready to do it; all at the same time as reading and interpreting the music notes and instructions on the page and following verbal instructions as well. It's constant problem solving and is effortless, presumably because it is non-verbal. Playing music has allowed me to "be in this world" in a sense.

That's as far as my foggy state allows me to think about it so far.

Added the bit about exam questions being predictable in the olden days. I hear things have changed since then!

Thanks, Oldtimer. Sorry to hear you have been ill for so long.
 
Episode 20 = How Are You Doing? Part Two

This week having had time to reflect, consider and incorporate the experiences of fellow folk with ME, we return to the complexities of answering the simple question, How you doing? On the way we discuss “coming out” as someone with ME and ask if we are doing our loved ones an injustice when we don’t share the full details of our illness.

 
Episode 21 – feat Antoinette and Anne, ME Support Northern Ireland

This week we share a recent chat with Antoinette Christie (Founder and mother to a son with ME) and Anne Smyth (benefit support and person with ME) from ME Support Northern Ireland. Recorded during Awareness week 2019 they share their honest and frequently heart-breaking experience of the illness and tell us what their organization is doing and plans to do in the future to support those living with ME.
https://podcasts.apple.com/gb/podca...ne-me-support-ni/id1146553155?i=1000439438241

and

Episode 22 – Chronic Illness and weight gain

This week we explore the deeply personal subject of weight gain when suffering from an illness such as ME\CFS. We chat about the frustration of losing the ability to exercise and look at how our relationship with food can change when a tasty treat might now be a highlight of a day. We also hear from other folk who have ME and are dealing with an issue that can have major consequences on not only our physical but our mental and emotional wellbeing as well.
https://podcasts.apple.com/gb/podcast/its-not-all-about-me/id1146553155?i=1000444537462
 
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This week we are joined by writer and very-much all-round great person J.E. (Jayne) Barnard. Jayne shares her long term experience of ME and chats about how it affected the whole family and also how she realized she had to find her own questions, answers and treatment to be able to just get by. She takes us through her process of writing several (award winning) books while living with the full-time job of having ME and offers experience of how she dealt with expectation, responsibility, demand and adrenaline.

The first books in her two series can be found on Amazon and are called When The Flood Falls (Falls Mysteries series) and Maddie Hatter and the Deadly Diamond (Maddie Hatter Adventure series).
 
Episode 26 and then there were three

This week we share our experience of the first ten days of first-time parenthood and explore our hopes and fears as a parent with ME\CFS. Please do get in touch with your experience, tips and support. All will be most gratefully received!
 
Episode 28 – One Family, Four kids with ME feat Sean and Niamh Henneberry

Some time ago, 14 year old Sean got in touch asking if he could come on the show and share his experience of having ME (Myalgic Encephalomyelitis). As we were getting organized to have our chat he revealed that all four kids in his family have the chronic illness. In this, first of two special episodes, Sean and his sister Niamh share their struggles and hope for the future.
 
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