Gary Burgess talking ME/CFS BBC Radio 5 live Wed 1pm

I think she has to ensure her funding streams are not cut off. She has mentioned inappropriate peer review previously.

 

Spot on @Amw66 she is in a tough position.

 

Welcome, @Gary Burgess! Terrific job in getting that big slot on R5L. One of the big problems that we've had is that the UK media has seemed to be in the grip of a psychiatric cabal that wants to promote CBT/GET on the basis of bad science, and that it's hard to break through their grip on the media narrative.

I'm sorry you've had to join the ME 'club' that none of us want to be in, though!

 

Great job @Gary Burgess

 

Thank you so much, all, for your comments. I've had a quick count and since yesterday's programme I've now received more than 1,000 across Facebook, Twitter, Instagram, LinkedIn, YouTube and email. I didn't expect that.

I've read all the comments here. I really appreciate the encouragement and understand those who've picked holes in what I've said and done. I won't engage in a debate on semantics or specifics as I'm knackered right now! But I did just want to say that those who complain or pick holes should remember I'm just one person trying to come to terms with my ME and doing my best to get coverage to benefit others. I know it's not perfect, but please try to see the good and the progress. Baby steps and all that! I managed to get 10 minutes on ITV News in the Channel Islands last week with the possibility of the coverage being run in other regions, the one hour on BBC Radio 5 Live yesterday, and I'm trying to open doors elsewhere too... but I also need to remember not to do too much as I'm already struggling.

My plan is to develop a podcast which will cover experts, researchers, medics, charities, politicians, policy makers, and 'ordinary' people like me who don't understand all the ins and outs of this dastardly thing but just want to help.

I'll let you know as and when I get it going (but I'm getting married in four weeks - eek - so I really do need to work hard at pacing myself this month).

Sending best wishes to all - and thanks to those who make this a brilliant resourceful, vibrant site. x

 

Gary you did an amazing job and got the message re the severity and debility of the illness over brilliantly. Congrats on getting the one hour slot and some great guests.

I think Julia N has done really important biomedical research and stuck with the ME community valiantly.

There are many people on this forum and others who have been ill for decades. They have been treated dreadfully by the Psychs controlling the medical narrative since the 80s and all of us want change today! At the very least we want PACE dismissed or used correctly. That is, it demonstrates that GET and CBT show no significant benefit for people with ME. This is despite its flaws and biases used to try and distort the picture.

We also want the Psychs (ie Psychiatrists, psychologists and other medical professionals, who follow the BPS mantra) to be stopped in their tracks, so that no more harm is done to people with ME.

Obviously we then have the acceptance of the reality of disease and appropriate disability awards where needed. Followed by funds for top quality biomedical research and treatments and cures.

PLUS we want that all now.

 

Sounded more like a wet blanket to me. She still doesn't utilize ICC in her work which is not excusable on any level. She can't complain (and I felt she erred toward a 'blame the rowdy patient' inference) about lack of quality science when she herself flouts the use of patient preferred criteria. I know she did throw in the towel at the CMRC (belatedly) but I always get the sense she's chummier with the Peter Whites of this world than the patient population. If my sense of this isn't correct then she needs to improve her game..both in using the correct criteria and being more dynamic and onside in public discussion.

 

@Gary Burgess My daughter is 24 next month and has ONLY been ill for 7 and a half years. Fortunately she escaped the threat of being taken into care because she could not get into school as in 2010, school leaving age was 16. Youngsters are still in this situation and being sectioned to undergo intensive, inpatient "treatment".
This has happened to adults as well.

This seems to be the only disease for which seven and a half years is a relatively short time, without potentially effective treatments. A moderate level of severity is one where you are doing maybe around 30% of what she used to be able to do. Often not a lot more than eating, sleeping etc with occasional brief trips out.

Sorry I did not mean to do a long post, I just really wanted to say that you are VERY welcome. Please do take time to rest so you can enjoy your wedding. Hopefully the weather will be better! It sounds as though you have found a lovely partner

 

Please also bear with us when are comments are critical and try not to take them personally.

'We' may well be speaking in grief, frustration and pain at the inexplicable hostility that the psychs have shown, unrelentingly for decades and the dreadful treatment, disbelief and judgement showered on us by doctors, media and public opinion

 

Thank you Gary for doing an incredible job. Being diagnosed with ME means a very sharp learning curve and I'm sure people here appreciate that.

Those of us who have been sick for a long time have lived through the equivalent of a silent war for decades. When there is the chance of publicity we hope that this time our voices will be heard.

When I heard your question about how we know so little I thought "finally!".

We can't keep taking "baby steps" or making excuses for why the patient voice isn't heard again. Following on from the ongoing (since the 80's) discussion on what PWME can learn from HIV/AIDS activists. We are not crumbs and we do not deserve crumbs. You didn't deliver crumbs but Radio 5 didn't seem to be willing to answer the question. It turned into yet another lot of patients describing how horrible this disease is (albeit with few calls from the severely affected sadly).

So when 5 Live have you in the studio and you ask the question "why do we know so little about ME" and then the program goes on and it's not answered. Then we feel frustrated as it is worth spending an hour on. The question was spot on.

What you have done, as a new patient, is fantastic. What we need as old survivors (30+ years for me) may be different from what a new patient needs though.

It's a common response to criticism that something is described as a start. We've had research that took ME funding described as a start that will benefit us, publicity that is a start that never turns into anything else. We don't need as a priority for patients any more general awareness raising. It's not contributing to a cure or further research. It seems we are always stuck on the start and then nothing important happens here.

Someone said to me recently that the story of what has happened to patients in the UK would make a great book. Another Osler's Web. Even if someone wrote it we'd still need the publicity to get the story across. I was grateful that you interviewed Jen Brea but there are also living UK patients who could have told the story and lived through it here. The patient from AFME wasn't a good fit and didn't appear to address the question you asked. The answer to your question would need to go into what went terribly wrong with AFME after all.

I hope that you can some how contribute to telling the whole story. Podcasts sound great. They need to be targeted though and maybe the place to start out is the history. You asked "how do we know so little...." and the question was never answered. The podcasts could answer that question.

We older patients can answer that question if someone gives us a platform. There are still living survivors of the Royal Free outbreak as an example. Yesterday's opportunity missed answering the question.

Rest up please. Get married and be kind to yourself more importantly right now. This is all for the future and only if you are able to.

 

I don't think anyone posted this link to Gary's five-minute post-radio YouTube message:

Code:

https://twitter.com/GaryBurgessITV/status/968897850561220608

https://twitter.com/user/status/968897850561220608

 

Take heart - this radio programme, (it's content, a few things aside, and that it happened at all) was good news. I'm only sorry it happened because Gary Burgess ended up in the same boat as us.

Newton's trying to do decent biomedical research in a difficult climate. It is a pity she didn't handle it differently but she's a researcher, not an activist.

Welcome, @Gary Burgess, I hope you find the forum useful! Thanks so much for yesterday, I can't remember the BBC ever doing anything quite like it - I hope it didn't impact you too heavily.

Rest up please. Be kind to yourself, and best wishes.

 

Well said. This is a discussion forum where people on this issue have tried to be both supportive but will be critical of elements if we see issues. It's not picking holes or something we idly, I've been fully bedridden well over a decade and have heard multiple conferences, debates, media awareness raising over that time. The frustration is AFME have no Wish to constructively move onto anything beyond symptom descriptions and the if only we were being believed narrative. Their reps have no intention on taking on the establishment. If patients try to say on their Facebook that ME is a better name for us etc they get deleted for being discriminatory when actually it's - as Newton says - pwME who've been essentially obliterated. 30 years of pretending broad criteria, vague name and a broad tent research approach works has been disastrous for patients but some dont want things to change in anything other than a slow evolution. The questions yesterday were great and we dont usually even get to that point but the answers less so useful.


I welcome Gary here. We all try to make contributions according to our knowledge, ability And platform. My recommendation for someone with a voice really wanting to make difference in a field that has stagnated for years (and not because of angry patients) is to get involved with the #MEaction network. There's a fabulous advocate on the Scottish side of things there Emma and #MEaction doesn't have establishment ties or connection restricting them, they also run the #millionsmissing protests In May featured in unrest, which desperately need more media interest in the uk to be effective, which you could really make a difference with as you work in a large media network. We need outspoken advocates with a voice , I can think, outside of patients who're ignored, only of about three in uk including the forums highly respected Prof J Edwards, so if you can be another, great and thanks.

 

That's what I thought too when I listened to her segment. She can't afford to bite the hand that feeds her.

Sir Wes' influence extends throughout all areas of the British medical establishment. If JN speaks out about the dodgy behaviour of her medical colleagues she could be blackballed or frozen out of future funding.

 

Not really the best person for the program then AFME, or is that why they put her forward, because she couldn't criticise

 

https://twitter.com/user/status/968890117359357952

 

Agree whole heartedly. Although in the past there have been massive attempts at raising awareness, it has been all-too-effectively stifled by those very powerful people who fear it. The big difference now is not simply about raising awareness, but raising awareness effectively, and that is a major difference. Which is why the stalwart efforts of @Gary Burgess and others could have a much bigger impact than ever before. The social media revolution is now becoming a game changer which the BPS crew are suddenly finding they cannot suppress.

Sincere welcome @Gary Burgess. With contributions such as yours, together with the good work of others, I think the situation for PwME may finally be turning. Really great .

 

I think it's impossible to say things in a manner that keeps every one happy. It seems every patient has their own individual peeves - for me, I hate the words "tired" and "fatigue".

And speaking on radio cannot be easy when the responses have to be formulated and delivered in the heat of the moment. I've been interviewed, but never live, so kudos for doing that!

Hope you have a fantastic day. My daughter was married recently. The venue provided a "quiet room for the happy couple" - LOL they didn't use it, but I sure did! So I hope there will be a quiet space you can use to take a little down time during the celebrations if required.

Great to see you here.