Podcast: "It's Not All About ME"

Know nothing more than there is a series of podcasts and Paddy, the host, has ME, have just started listening to episode one and Paddy comes across very well. There doesn't seem to be any hint what each episode is about so pot luck I guess.
https://soundcloud.com/user-23503120

ETA: The podcast is on Twitter, https://twitter.com/0allaboutme

 

Hey Andy
Thanks for posting this. I am grateful for the invite to the forum too. I have just introduced myself in the new members section. I look forward to getting to know everyone.
Paddy.

 

Thanks @Andy and @Itsnotallaboutmepodcast

I’m listening now via the link, but is there a way to access other podcasts? I can’t download new apps to my phone as i can’t sign in to apple and don’t have soundcloud or twitter.

Tried typing ‘its not all about me’ on the soundcloud page that the link takes to but nothing came up

Edit to add: scrap that the other episodes have just appeared underneath sounds good!

 

New episode, an introspective and engaging episode where Paddy reflects on gratitude and powerlessness.

iTunes - https://itunes.apple.com/gb/podcast/inaam-ep-11/id1146553155?i=1000430084680&mt=2

Soundcloud -

 

Latest episode,

 

https://twitter.com/user/status/1102472592928198661

 

New episode, Paddy talks to Rosa Devine, whose comic on ME was featured recently in the Irish Times, who also interviewed her.
https://itunes.apple.com/gb/podcast/inaam-ep-14-feat-rosa-devine/id1146553155?i=1000432167452&mt=2

https://twitter.com/user/status/1107557255258537984

 

This week

https://s4me.info/threads/podcast-its-not-all-about-me.8126/#post-152556

https://twitter.com/user/status/1110088358783528960

 

This weeks episode features @JohnTheJack

https://twitter.com/user/status/1112636781034434560

 

This, a million times. Thank you for expressing it so well in such a moving interview, @JohnTheJack .

 

I would recommend every ME/CFS patient to listen to this podcast. It's very valuable to hear someone who has lived with this illness for so long share his experiences.

There's one very moving passage in the middle of the podcast about not feeling guilty. I don't have the energy to make a full transcript but I would like to share this passage, hoping that more people will read or hear about it, as it may be helpful to them.

From minute 28.30:

Patty: “[...] Not only do [ME/CFS patients] have to deal with this illness, but there is such guilt associated with it that every day one isn’t back to your old self, [it seems] that one is failing, you know…”

John Peters: “I don’t Patty. I’ve never, ever, ever felt guilty. I never felt that. The problem has been that others have looked at me differently. And I never felt that I needed to apologize to anyone, I never felt that I felt guilty at all. And I feel very strongly about that. Even though I’ve been ill for […] 33 years now, I can look myself in the mirror and I know that I have done everything to get better at every possible moment. That I lived every day, every minute of every day, at the maximum of my capabilities.

“And because of that, I don’t feel guilty. And I don’t feel guilty at all and I never have. I don’t feel guilty for the way I behave. I don’t feel guilty for anything at all because I have a terrible, awful illness. The people who should feel guilty in my eyes are first the people who promoted this perverse, terrible model based on no evidence whatsoever and two; the people who had been bought into it and haven’t trust me.

“Cause I’ve had friends right from the beginning who’s said: ‘I know John and I know that if he’s like that he’s got to be very ill’. But I also know people quite close to me, who looked at me and said: ‘why are you being so precious, at least you can make an effort’.

“I don’t feel guilty that I cut those people out of my life. I feel very strongly about this and as you can probably hear from my voice I’m quite emotional about it because there are people very close to me that I don’t speak to. And I don’t feel guilty about that. They are the ones that are guilty, not me.

“I have a terrible illness that has destroyed my life and has taken everything from me. I have had no job, I have had no career, [...] I have no family, I’m alone and I have no prospect really now, I think at my age, of ever having a family. It’s a terrible, terrible thing to have a life unlived.

“And those people who haven’t supported me right from the beginning and said: ‘I know you, I’m on your side’ or whatever, they are the ones who have to feel guilty. And the people who have given the ammunition, the psychiatrists and psychologists who have promoted this false model, they’re the guilty ones, I’m not. “​

 

There's one other passage in the podcast that deserves to be repeated because I think it eloquently explains why the problem goes far beyond GET/CBT and lies within the fear-avoidance model itself. Patients do not necessarily have to follow GET/CBT or even have contact with a doctor who believes and promotes his model. Simply to have this model accepted by the medical community, is enough to harm patients. Friends and family will look up info on the internet and will look at patients differently.

Starts at minute 26.30:

John Peters: “One of the worst things is that it’s making the patient an unreliable witness to their own body. That’s a terrible thing. It means that their friends, their family, the people that would normally support them, their doctors, look at them differently. And that is impossible to escape. It’s going to do that.

"If you’re told that your, in my case, 30 year old son who slumping morosely around the house, not saying hello to anybody, just sitting there before the TV, sleeping or staying in bed all morning, getting out to watch TV and then going back to bed, not taking part in family life at all etc.

"And if you’re then told why that this person is behaving that way and that he has the ability within him to get better, to change the way he thinks and increase its activity levels and so recover. If you’re told that by the medical profession, you’re going to look at him differently. It’s unavoidable.

"So it’s creating a barrier between the patient and the people the patient would normally look to for support. I think that is one of the most horrible things. And as I say, it’s making them unreliable witnesses, so that everybody’s opinion is better than that of the patients. The patients do not know what’s best for them, so you can come along and tell them. And I think that’s terrible. It’s really deeply painful. I think that’s a horrible thing to do."​

 

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.

 

It's Paddy

 

Apologies Paddy, @Itsnotallaboutmepodcast

Thanks for making the podcast!

 

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.