My ME story on BBC Radio Jersey

I seem to be pursuing around the forum and nagging you about being more visible, @Gary Burgess, but how about putting your name in the title (at the end in brackets, maybe)? People will be interested because it's you. :)

If you pull down the 'Thread tools' menu at the top left just above your post, you'll see the option to 'Edit title'.

Thanks for starting this new thread! :thumbup:
 
Gary Burgess said:
Hi all. BBC Radio Jersey very kindly interviewed me about my ME, today. It’s an hour-long interview, and you’ll find it two hours into this programme link, if you wanted to take a listen. ❤️ http://www.bbc.co.uk/programmes/p05x7wqd
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Hi Gary, thanks for the post. I’ve not had a chance to listen to the programme yet but I wanted to make a more general comment. It is great that you’ve managed to get so much media coverage but, as I’m sure you appreciate, it is also a tremendous responsibility. Many people have been fighting for appropriate media coverage of ME for decades with very little success. It is therefore of paramount importance to try to ensure that the exposure you are given is used to maximum effect. Human interest stories have their uses but what we really need is an examination and exposure of the underlying issues which have resulted in where we are today: the failure of the scientific community and medical establishment to see through the pseudoscientific ideas and flawed science of the BPS crowd, the failure of doctors and institutions to listen to, believe in and advocate for patients, the organised campaigns to smear patients and slilence criticism, the failure of governments to fund biomedical research, and the reasons behind all these failures.

I realise you are relatively new to ME and there is a lot of history to understand, but you/we really must seize every opportunity to ensure that these issue are exposed and reported.

I do not mean this as a criticism. It’s great that you are using your position to try to help others with the same diagnosis, but I am also aware of how ignorant I was about many of the issues until quite recently, despite having been unwell for 26 years.

If you have not already done so, you may be interested to read this analysis of the recent Westminster debate on PACE: https://www.meaction.net/2018/02/26...pace-trial-and-its-effects-on-people-with-me/

Thanks for engaging with this forum, and thank you for all your efforts.
 
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Thanks, @Gary Burgess. I have just listened. I thought you did very well. I like your battery analogy - it's one I've used for a long time too.

I was glad you managed to make it very clear that the NICE guidelines GET is completely wrong and very harmful, and to talk about the scandal of the psychiatric view of ME and the PACE trial.

I also liked the chance you had at the end to explain the effect of doing such an interview was having on your symptoms - and that you might sound fine, but are in a lot of pain and will need to be in bed for the rest of the day.

It's something I found difficult when I was mildly affected - people would only see me when I was apparently functioning normally and hiding my symptoms for a short part of the day, and had no idea of the payback afterwards and amount of time I needed to rest.
 
Thanks all. Appreciate your kind feedback. And for those (understandably) concerned about somebody advocating for others without them being fully informed, I am, intentionally, only speaking for myself and sharing my own experience right now for that very reason. As my knowledge increases I want to be able to campaign and gain exposure where and however I can - using the vast wealth of knowledge, wisdom and support on this site and elsewhere. Best wishes all.
 
@Gary Burgess
you mentioned on the programme you were particularly interested in the children with ME.
Please, please before you go any further with this (if you intend to) read up on Esther Crawley

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

and AfME
http://me-pedia.org/wiki/Action_for_ME

for reliable information on the situation I would suggest TYMEs Trust
http://www.tymestrust.org/
and I am sure that if you asked, Jane Colby would be more than happy to give you the low down.

Sorry to add to the 'work load'.

and for some lighter reading......................
How To: An ME/CFS Friendly Wedding Part 1
https://myjourneythrume.wordpress.com/2015/10/07/how-to-an-mecfs-friendly-wedding-part-1/

eta: "
Science Media Centre Expert on PACE trial

Crawley was on of the experts chosen by the Science Media Centre to comment on the PACE trial publications in February 2011 and January 2013. She said “All children with chronic fatigue syndrome and their parents are desperate for new research to understand how to treat this condition. The next step is to do a study like this for children to find out if these treatments work""
 
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Sly Saint said:
@Gary Burgess
you mentioned on the programme you were particularly interested in the children with ME.
Please, please before you go any further with this (if you intend to) read up on Esther Crawley

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

and AfME
http://me-pedia.org/wiki/Action_for_ME

for reliable information on the situation I would suggest TYMEs Trust
http://www.tymestrust.org/
and I am sure that if you asked, Jane Colby would be more than happy to give you the low down.

Sorry to add to the 'work load'.

and for some lighter reading......................
How To: An ME/CFS Friendly Wedding Part 1
https://myjourneythrume.wordpress.com/2015/10/07/how-to-an-mecfs-friendly-wedding-part-1/
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Yes @Gary Burgess, I agree this is a crucial prerequisite before discussing children with ME in public.
 
I thought it was a very good programme pitched well for the audience and time of day, but still referencing really important issues (albeit briefly, but understandably so in context) such as the awful situation re: children, and also GET harms generally. Two uses of the word 'scandal' with regard to ME on bbc radio in an hour! (2? 2+? - my concentration slipped a bit). Well done.

Good to hear you're formulating ideas for what you want to tackle in more depth.

Rest well.
 
Were the references to children with ME in the second half of the programme? I missed that and I'm not sure if I can put myself through listening to Julia Newton again. My heart sinks whenever I hear anything to do with AfME. When my daughter first got ill I contacted AYME and was immediately and emphatically directed to Esther Crawley, being told she was the best expert for children. :wtf: Luckily Google informed me otherwise so we didn't pursue it. I've never forgotten that and now of course AYME is now part of AfME so I imagine they're still doing the same. When I think about how I trusted a charity to help and give good advice, it makes me very angry and upset. :mad:

@Gary Burgess Please get in touch if you want to pick my brains. I have an awful lot to say about children with ME in general! This primer has been my point of reference more recently https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full I tweeted you the link to the Radio Solent interview I did with Emma but I know you said you'd had a lot of contact so might have missed it.

Oh I think I've just realised this is talking about your interview on BBC Radio Jersey. I will listen to that!
 
Listened to both interviews today, great job @Gary Burgess.
You're the first person I've heard describe an out of body experience as a symptom. I had them frequently in my first 2 years, but had completely forgotten about them - typical ME memory, lol!

On the last caller to the phone in, I'd say we really need to be out and proud with our diagnosis. ME is a disease not a shameful secret. We need to hold our heads up high (or at least prop them up on high pillows). I've known some people be more open about their sexually transmitted diseases than many PwME are willing to talk about their diagnosis.
This needs to change and it's a change that starts with us - because what we project to the world about ourselves and our illness informs the opinions of others.
Eradicating the stigma of ME is within our power as a community.
 
chicaguapa said:
Were the references to children with ME in the second half of the programme? I missed that and I'm not sure if I can put myself through listening to Julia Newton again. My heart sinks whenever I hear anything to do with AfME. When my daughter first got ill I contacted AYME and was immediately and emphatically directed to Esther Crawley, being told she was the best expert for children. :wtf: Luckily Google informed me otherwise so we didn't pursue it. I've never forgotten that and now of course AYME is now part of AfME so I imagine they're still doing the same. When I think about how I trusted a charity to help and give good advice, it makes me very angry and upset. :mad:

@Gary Burgess Please get in touch if you want to pick my brains. I have an awful lot to say about children with ME in general! This primer has been my point of reference more recently https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full I tweeted you the link to the Radio Solent interview I did with Emma but I know you said you'd had a lot of contact so might have missed it.

Oh I think I've just realised this is talking about your interview on BBC Radio Jersey. I will listen to that!
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AYME came up as the main charity when my daughter was diagnosed. Once FITNET was launched on press i had concerns, after digging deeper i became aware of the political hot potato that ME is.

What quickly became clear was that EC has no clue as to what ME is and creates merry hell in a particular part of the country- and travels to " save" unfortunate children outwith her catchment area.

That said the AYME online parents forum was a godsend - some if the best advice i' ve had from patents who have got the t shirt in a bigger size than I. After transferring to AfME by default many members are simply letting membership lapse.

The difference now is that other professionals across the world are taking an interest in EC' s research and on the plight of the children who are quickly discharged from her care when they fail to respond to " treatment"

That noone knows of this outwith the sounding board of ME forums and charities ,- such as tymes trust- that do try and raise things but fail to get column inches/ airplay is what needs to change.
 
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