The ME Show

Wonderful @Trish and @Gary Burgess that was a really good interview, very informative.
You sound lovely Trish. Best wishes to Hannah.
I'm liking the natural, relaxed conversational style these of these interviews, it makes them comfortable to listen to.

 

@Trish you came over very eloquent and did an excellent job of conveying the debilitating nature of symptoms and their impact on daily living in a very down to earth and relatable way. Thank you very much for doing this. I know it will have impacted you before and after and I really appreciate that and the lucidity you brought to explaining what it is like to have ME to a wider audience.

 

@Trish, @Gary, Hannah

 

Listened last night - great job @Gary Burgess and @Trish

I'm a total believer in the importance for the ME community to create media to move our collective efforts toward equitable health care and this podcast is exemplary.

 

Really enjoyed your interview @Trish. Your responses were thoughtful, considered and considerate – just like your posts here on the forum.
Same goes for @Gary Burgess. Thanks to both of you.

 

Missed this podcast and just saw this thread on the 6/11 weekly roundup. Very good.

 

Dear @Gary Burgess, please take good care of yourself!
I am always looking forward to the next episode of the ME Show, but I don't want it to come at the expense of your health!

If it were a fortnightly or monthly podcast (or whatever suits you best) - fine by me! If you need a break - go have one!

(One of the commentators on your blog suggested monitoring your heart rate. I only recently bought a wrist-worn monitor and it HAS been an eye-opener! Although it was a bit frustrating to see that I have to limit my activities even more, and I don't do much! But to overdo it every single day is certainly not wise. And there is a chance to expand your energy-envelope over time...)

Best wishes from a Fan from Germany!
Lisa

 

Best wishes to Gary.

They've been coming faster than I can listen to them... slow down for my sake!

 

Yes do take it slower if you need to @Gary Burgess

sometimes our own sense of responsibility weighs heavily I know but you need to make your health your top priority. The shows are a great thing and it sounds so natural and easy but there is hard work behind all this. A lower frequency of shows that is more manageable for you is a good thing for everyone.

No one would want their enjoyment of the shows to take something away from you I’m sure.

 

Being much to long here, but many of us have walked down this road before. No one else should do it, at least not without warnings and advice.

Be very careful now, Gary! You are still quite early on, and this is a very important time to try to do things right. Many of us have done exactly the same as You with very bad longtime effects.

It is not strange that this happens time and time again. First you have short spells of the healthy you and “wow, I think I’ve overcome it”, the very strong natural human instinct of pushing trough, maybe the general and positive, but in ME sense very unhelpful, “just carry on in the best possible way”, and other factors. The cumulative effect of uncertainty (no biomarker) and lack of proper knowledge and advice is very wrong all together. If not doomed to go wrong, the probability is exponential. The really difficult thing with this, that result in 9 out of 10 not managing, is of course that limits are absurdly low, so low that you will go into some sort of unconscious denial. This is why real knowledge of PEM and consequences, and taking good actions early on is so important on so many levels.

If there is a time to listen very close to longtime patients, it is now. When the dynamics of PEM - you have to be extremely careful. If you can manage this in the early stages ((which most people haven’t done in the past), it could have very significant impact. I guess managing here means doing as least harm as possible. You must avoid the rollercoaster of overdoing and payment early on which can cause immense harm. To put it frankly in an unscientific language, which I think many long time patients can relate to: I”m quite sure that if you push trough over and over again, the whole system will at some point (irreversibly) break down.

A little digression: the actual onset of ME either bang bed bound or a more gradual onset, is a choice of pest and cholera. We have a lot of “miracle stories” of other conditions labeled as ME and LP. That is not interesting. At the same time there may be some real cases of ME and improvement. It is worth noticing a common pattern when hearing “miracle-stories” of ME and LP (or maybe other bogus interventions). You will almost always have the bang onset, the “dark room and curtain situation” for months, often a year, but often not sick for very long all together. It will by the ones that tell the stories justify that these patients were really sick. No one should question that which is not the point here, the important point here is that these patients actually early on got a proper chance to recover. Then it may be disguised as recovered by LP or something else. As said, it is pest and cholera, but the some sort of gradual onset which the majority experience, is cruel because it is almost impossible not to do things wrong early on. Best advice for maintaining health and quality of life in the long run, not making PEM the permanent state, clearly must be what medicine itself ought to tell you but never will: be very careful of not overdoing.

I don’t know what it takes to make these podcasts but it comes as no surprise. I would imagine it takes a lot on top of other things, and they’ve come rapidly. Top of my head - I would like to hear a podcast every second month or so.

 

Selfishly I would like to hear a podcast every week because they're good but I would far rather you take longer between them to better manage your health as others are also telling you. Fortnightly? Monthly? We can't know what's best for you but we will understand! Please give it some serious thought.

 

Episode 7 is online! http://www.meassociation.org.uk/podcast/

 

Loved the interview with Emma. Good to hear her own experience too and how she’s doing now.

Well done @Gary Burgess

 

https://twitter.com/user/status/1008618243936923650

 

Just listened to episode 5, @Gary Burgess and @Trish talking. Thank you both so much for expending your precious energy on this.
I think it gave a really good view of what it is like to live with ME. I agree with you about the hrm @Trish. Extra steps leads to a crash. I am surprised at how few I can manage these days. There is definitely a deterioration over the last 3 years.

 

You are all the loveliest people. I try to post here each Monday morning when a podcast goes live but have only just managed to get here now. I wasn’t expecting all the kind words and wise advice. It is both noted and appreciated.

For what it’s worth there are three more to come in the series - I’m keeping them weekly, but if there’s a second series I’ll probably produce them over a longer period of time to give myself less of a weekly deadline to hit.

They remain a privilege and pleasure to produce. I’m learning so much about so many amazing people.

And, though I know you know, here’s the shameless plug to the podcast link again: www.meassociation.org.uk/podcast

x

 

Another thumbs up here for this weeks episode Gary - thank you.

 

The ME Show is now on Spotify
https://twitter.com/user/status/1010448655336312835