The ME Show

[Gary Burgess]

Exciting news.

I’d love you to spread this far and wide. With kind support from the ME Association I’m launching a new podcast series: The ME Show.

PLEASE subscribe for free here: https://itunes.apple.com/gb/podcast/the-me-show/id1374903449

Even though there’s only the ‘teaser’ episode there, if you felt able to rate and review while you’re there it pushes us up the rankings and makes the podcast visible to others.

I’d also love your suggestions for guests for future episodes. I’m starting slow and steady, but I hope this gathers momentum and proves helpful to those with ME and helps those who don’t have it to understand it more.

 

[Trish]

Great idea, @Gary Burgess.

I've hit a stumbling block. I don't have i tunes, and I'm a technology numpty, and haven't a clue whether I can get it free or have to pay.

 

[Gary Burgess]

Then do not worry @Trish. You can listen through the online player here:

https://www.buzzsprout.com/172265

x

 

[Tia]

@Gary Burgess this sounds good. I thought you were great in your recent radio interviews - you obviously have a natural talent for this kind of thing (and you obviously have lots of experience). You came across so well. I'll give this a listen asap

 

[Trish]

Thanks Gary, that worked!
Great idea, and really pleased you're working with the ME Association on this.

 

[Andy]

Great news Gary.

My first suggestion for guests would be @The UK ME/CFS Biobank. Website is here, https://cureme.lshtm.ac.uk/, we did a Q&A with them in December, and the ME Association part fund them.

 

[Hutan]

Listened and rated. I'm looking forward to the episodes.

 

[Mattie]

Great initiative Gary,
Listened, subscribed and rated 5*

 

[andypants]

This is great news! I have wished for a quality ME-podcast for a long time will listen, rate and review when I can.

 

[Melanie]

I’m launching a new podcast series: The ME Show.

 

[Sunshine3]

An interview with Simon McGrath, Chris Ponting are suggestions. Also the severe patient in Liverpool, Sophie Cooklyn, maybe her partner could speak on her behalf if she was unable to do so....Jessica Bare Taylor is another patient who featured in Unrest and is about to punlish a book 'Girl behind dark glasses'...I am losing the run of myself, apologies!! Our own Jonathan Edwards, Carol Monaghan and any patients willing to chat (who have M.E as per ICC or IOM criteria).

 

[dangermouse]

This is great @Gary Burgess

I appreciate you doing this and the sound quality is clear too.

I’m looking forward to these podcasts and I’m hoping that people in my life will learn from them too.

Great that you’ve worked with ME Association.

Hope you’re doing OK, don’t overdo it.

 

[Allele]

Thank you, Gary, I'm really looking forward to listening

 

[Melanie]

@Gary Burgess I would appreciate your discussing how damaging media and at times patients saying Chronic Fatigue instead of saying Chronic Fatigue Syndrome is. Of course, ME is preferred but many are diagnosed with CFS but again and again, they themselves will say Chronic Fatigue.

It is my opinion that due to the Oxford criteria some with CF have been misdiagnosed with CFS and this conflating the two names, a symptom, and a grossly misnamed disease, has played into the PACE authors being able to get away with their unethical trial.

http://me-pedia.org/wiki/Chronic_Fatigue

Also, patients keep saying "recovered" when they are not recovered from ME, CFS, or SEID. They overcame the initial illness but were left ill and never returned to their pre-illness level of health. When trying to educate the public, every word counts.

 

[Melanie]

@Gary Burgess And if someone calls in saying they overcame their illness and are now running Marathons, perhaps you should address the Oxford criteria (and Fukuda) and the fact that it misdiagnoses people with CF as having CFS.

 

[Allele]

@Gary Burgess And if someone calls in saying they overcame their illness and are now running Marathons, perhaps you should address the Oxford criteria (and Fukuda) and the fact that is misdiagnoses people with CF as having CFS.

oopsie

 

[Sunshine3]

Oh God yeah, the last thing we want are chronic fatigue I'm recovered due the Lightening process BS.

If only a line could be drawn that separates ME/CFS as per ICC from Oxford criteria folk. I dont believe for one second that there are 250,000 people with true ME in the U.K.

There is an estimated 14,000 here in Ireland, how that can be when doctors can't even diagnose it? We have an ME Ireland facebook page in Ireland 500 members. So I reckon we have about 3000 real ME patients in Ireland at an absolute stretch. The over inflation of numbers annoys me.

 

[Melanie]

oopsie

Fixed it.

 

[Melanie]

If only a line could be drawn that separates ME/CFS as per ICC

Yes. And address the different criteria. ME/CFS is Dx'd with CCC but ME with ICC. Even SEID will Dx ME/CFS due to using PEM. And now that Leonard Jason is making the great effort of defining PEM including the fact that it is often delayed by 24-72 hours and can last 24 hours or weeks and all the symptoms it can set off, this will be very helpful. A show explaining PEM especially after it is thoroughly defined will be useful.

Is this the end result of the survey we took, @Leonard Jason? I can't remember when we filled out that survey. https://www.researchgate.net/publication/323916016_Patient_perceptions_of_post_exertional_malaise

Anyway, @Gary Burgess, you can get in touch with Dr. Jason and go over PEM.

 

[Melanie]

And I know there are the different severity of the disease. I was not severe for 20 years yet quite compromised and experienced PEM not knowing what was going on. I worked full time, yet my health compromised. Could socialize, yet my talking and ability to handle loud talking compromised. Go on vacation, but couldn't keep up with family and friends. And I always needed a day here or a weekend there to recuperate. Those of us who are not severe do not always see ourselves in the reporting of ME/CFS. I am severe now but not bedridden or in a wheelchair and all but housebound and disabled now but overall look after myself. There are probably severity and types to ME/CFS and perhaps the different criteria of SEID, CCC, and ICC are defining that.