1. Guest, 'News In Brief' from w/c 3rd Dec can be read here.
    Dismiss Notice

My ME story on BBC Radio Jersey

Discussion in 'General ME/CFS News' started by Gary Burgess, Mar 4, 2018.

  1. Gary Burgess

    Gary Burgess Established Member (Voting Rights)

    Messages:
    39
    Likes Received:
    1,002
    Location:
    Jersey
    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
     
    ahimsa, Solstice, Hutan and 42 others like this.
  2. Mattie

    Mattie Senior Member (Voting Rights)

    Messages:
    146
    Likes Received:
    1,389
    Thanks for sharing Gary!
    Listening right know.
    For others who cant immediately find it, it starts at exactly 02 hours and 10 minutes.

    Edit:
    Just finished. Great Job!
    Congratulations on and best wishes for your upcoming marriage @Gary Burgess
     
    Last edited: Mar 4, 2018
    ahimsa, Forestvon, Hutan and 21 others like this.
  3. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    2,462
    Likes Received:
    17,603
    Location:
    UK
    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:
     
  4. Melanie

    Melanie Senior Member (Voting Rights)

    Messages:
    439
    Likes Received:
    2,324
    Thanks for your efforts. Very good job.
     
    Forestvon, Hutan, MeSci and 9 others like this.
  5. Nellie

    Nellie Senior Member (Voting Rights)

    Messages:
    132
    Likes Received:
    1,106
    Thanks again Gary, two one hour programmes in one week must be a record.

    You mentioned B12 injections - I've used very fine needles that are used for insulin injections, and had very little if any pain.
     
    Alison Orr, MeSci, MEMarge and 7 others like this.
  6. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

    Messages:
    275
    Likes Received:
    3,545
    Location:
    UK
    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.
     
    Last edited: Mar 4, 2018
    Hutan, Alison Orr, TiredSam and 6 others like this.
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    2,140
    Likes Received:
    17,750
    @Gary Burgess good job.
    if there is anything ME related you need easy access to I suggest me-pedia:
    http://me-pedia.org/wiki/Welcome_to_MEpedia

    couple of questions: you say you are seeing an endocrinologist...is this on the NHS?
    you are getting B12 injections; again, is this on the NHS? If so do you know what tests they did beforehand?
    thanks.
    rest now.:asleep:
     
    MEMarge, Barry, Indigophoton and 4 others like this.
  8. Trish

    Trish Moderator Staff Member

    Messages:
    8,697
    Likes Received:
    48,142
    Location:
    UK
    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.
     
  9. Jan

    Jan Senior Member (Voting Rights)

    Messages:
    401
    Likes Received:
    2,939
    MeSci, Missense, MEMarge and 7 others like this.
  10. Gary Burgess

    Gary Burgess Established Member (Voting Rights)

    Messages:
    39
    Likes Received:
    1,002
    Location:
    Jersey
    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.
     
  11. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    1,176
    Likes Received:
    7,037
    I would recommend checking out the Valerie Elliot Smith files if you have not already done so. The contents explain the whole sorry state of affairs we are in today.
    https://valerieeliotsmith.com
     
    Alison Orr, Jan, Skycloud and 4 others like this.
  12. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    3,295
    Likes Received:
    21,800
    Not that we are trying to drown you in helpful information or anything @Gary Burgess ;):rolleyes::)
     
    Forestvon, Hutan, Mattie and 15 others like this.
  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    2,140
    Likes Received:
    17,750
    @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""
     
    Last edited: Mar 5, 2018
  14. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    3,295
    Likes Received:
    21,800
    Yes @Gary Burgess, I agree this is a crucial prerequisite before discussing children with ME in public.
     
  15. Trish

    Trish Moderator Staff Member

    Messages:
    8,697
    Likes Received:
    48,142
    Location:
    UK
    I thought Gary did very well in his bit about children. He made it very clear that many have problems being believed, being wrongly treated, and the horrors of parents being blamed and kids being taken away.

    Have a good rest, Gary.
     
    Forestvon, ukxmrv, petrichor and 16 others like this.
  16. Joh

    Joh Senior Member (Voting Rights)

    Messages:
    692
    Likes Received:
    5,584
    Location:
    Germany
    Thank you so much for your awareness work from Germany @Gary Burgess! I'm very grateful and think you're doing an amazing job. :)
     
    petrichor, cyclamen, Mattie and 9 others like this.
  17. Skycloud

    Skycloud Senior Member (Voting Rights)

    Messages:
    1,296
    Likes Received:
    9,810
    Location:
    UK
    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.
     
    Forestvon, Amw66, ukxmrv and 13 others like this.
  18. chicaguapa

    chicaguapa Established Member (Voting Rights)

    Messages:
    70
    Likes Received:
    679
    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!
     
    Allele, MEMarge, Amw66 and 8 others like this.
  19. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

    Messages:
    1,201
    Likes Received:
    8,731
    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.
     
  20. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    1,176
    Likes Received:
    7,037
    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.
     
    TiredSam, Sly Saint, Solstice and 9 others like this.

Share This Page