Gary Burgess on his ME

Why do we know so little about ME?

TV journalist Gary Burgess was diagnosed with ME late last year and started a blog on the illness.

He is guest editing on BBC Radio 5 live, asking why so little is known about an illness which affects so many.

Rest at http://www.bbc.co.uk/programmes/articles/3zwwH9C8fRfGBdQl0c8gVGQ/why-do-we-know-so-little-about-me

 

Good blog @Gary Burgess and congratulations on forthcoming wedding.

 

Thank you both. BBC Radio 5 live have kindly made the hour's programme available as a downloadable podcast if you happened to want to hear it. I know some have expressed frustration that X/Y/Z wasn't covered though, of course, it's impossible to talk about everything in just one hour. Personally, I'm just so pleased they were good enough to devote an hour of national radio. I intend to use this momentum to push for further coverage to allow further exposure of other issues and aspects around ME. Best wishes.

http://www.bbc.co.uk/programmes/p05zr1v3

 

Welcome @Gary Burgess and thank you for sharing your story on BBC radio. You are helping thousands in feeling less lonely and less stigmatized.

 

@Gary Burgess are you familiar with the PACE trial? It demonstrates why there has been no progress in 30 years.

Some psychiatrists insist they understand CFS and know how to treat it but they are just charlatans who publish fraudulent research, and they have been skillfully controlling the narrative for the last 30 years. If we want to see progress, they must be exposed for the charlatans they are, and power given to real scientists.

 

Sure am. Thanks, Strategist. It's a scandal, as I said on BBC Radio 5 Live this week. It's something I intend to say and do much more about as I develop trust with those in a position to be able to give me a platform to talk about these things.

 

This is great, Gary. Patients' inability to get a platform where they (and the clinicians and scientists who are PACE experts, such as David Tuller) can criticise PACE and press the PACE investigators on the hard questions has really hurt us. There's a huge imbalance in power.

I'm so pleased you're on the case. There are people here who can help you on PACE, such as @Tom Kindlon and @Jonathan Edwards.

 

My feeling always is that it's better to focus strongly on just a few powerful messages (or even just one) in a session, than try to sandblast people with everything all in one hit, and end up throwing lots of information at people, but transmitting no message that normal mortals can pick up on. Little and often would be my preference, addressing a new potent message each time, whilst ensuring the earlier messages did not get left behind. Just my own personal perspective.

 

@Gary Burgess that sounds like a plan

Great to have you here.

Congratulations on your wedding.

Take care to rest plenty...don’t push beyond your limits.

 

Thanks Gary, Quite understand. You are doing a fantastic job and given that you have ME yourself, ever more fantastic. Thank you.

Hope that you are given the opportunity one day to get that question of yours answered properly on air.

 

@Gary Burgess thank you so much. It is great to have you on board and that you are willing to speak out for us. We face massive injustice and stigma. Thanks for bringing hope.

 

Hi Gary, congratulations on getting an hours show. Can I ask who the producer was please and how much control over the show you get?

Thanks

 

Hi SummerSky

For sure. The producer, Rob, asked me for the ‘types’ of people I wanted. I asked for a medical expert, somebody from a charitable/campaigning perspective, an employment law expert, and Jennifer Brea specifically.

There were and are a million other things I’d like to do but the purpose of that specific show was awareness-raising to a mass audience rather than other more specific and detailed issues, eg. I want to do a whole load on the scandal of the PACE trial. This wasn’t the right occasion.

It’s helped open the door to more things, which is exactly what I was hoping for. The next key thing for me, in time terms, is to raise awareness of Millions Missing day on 12 May... though I need to properly rest up and recover first!

 

Hi @Gary Burgess, nice of you to join us.

For others: here are Gary's "Zonked Club Community" video's:
https://www.youtube.com/channel/UCSElEnKWepVZWX8VwKfgo6Q/videos

 

I think you've done brilliantly @Gary Burgess and must be getting a bit tired of all the advice by now.

I would just like to say that one of our big advocacy hindrances is that not all medical experts are equal or even neutral in the eyes of patients.

Typically, in the past AfME are called on as THE patient group, but many of us oldtimers left their number because they constantly appease the BPS school. If they do ever speak out it's in a very wishywashy kind of way.

The SMC is also the go to source for information. They have been very heavily biased toward the BPS view of ME and Wessely has fingers in both pies.

As the "medical expertise" has been so one sided in the media, it has helped enhance the picture of irrational patients vs the benign system. This has had a very serious knock on effect in terms of stigma , which has made people reluctant to let people know they are sick and, in turn, stifled research that isn't from the BPS school.

You may already be very aware of this, in which case I apologise for teaching you to suck eggs!

 

I'm guessing Rob (the Producer) went to AFME and that was how you ended up with Julia Newton and Emily Beardall. Also Emily works for AFME as a volunteer and I don't personally think she wasn't a good fit because she wasn't actually diagnosed until 4 years ago. Her "campaigning" seems to be only as a AFME "volunteer" and doesn't involve any of the petitions, NICE guidelines, demonstrations, various Govt reports and all the other milestones of the past decades that one would expect from a "campaigner".

The employment law expert felt a bit tacked on at the end and I'm not sure if she added any value. Not sure how many patients would need general advice as most I know are too sick to work. If they do have "good times" and try and find a part time job then they face the same challenges that all sick and disabled people face. Employers in my experience won't touch the long term sick. We face different challenges than the stable and disabled.

I think it would have been useful to explain at that point how very sick patients are and how suddenly and how that robs them of careers and education overnight. It's benefits that are the battle for most patients I am guessing. Then poverty through long term sickness, no real medical care or treatment and left to rot and die.

Those with work place pensions and insurance can find that there are no medical experts willing to act for them. They can face insurance companies that insist patients do CBT and GET. I know of one patient who had that problem and deteriorated.

I think that the employment law expert did make the very good point that one needed to be covered by disability / human rights legislation. Delays in a ME diagnosis are going to cause this. However, what PWME face is something quite specific. Normally in the UK it's diagnosis and then treatment - in the UK for ME it's often a superficial diagnosis from a poor excuse for an "expert" and then potentially harmful treatments if at all.

It could also be pointed out that if one is employed and gets ME then the advice given though any workplace medical expert (especially if allied to an insurance company) can be just plain wrong and harmful.

Are there any other groups of sick people who face this extra challenge in the workplace?

Employment becomes the "least of our problems" because they have an incurable disease and no medical experts to help them. That's the position we find ourselves in. I'm certainly in that position. Employment law isn't much help if too sick to work and no medical treatment at all.

 

Thank you so much @Gary Burgess for going public and using your significant professional connections to bring awareness and truth to the largest possible audience. It would surely be easier to stay incognito, so I thank you for your courage, forthrightness and bold intention for the benefit of all. It's truly not just for PwME that awareness is important--all those who may be exposed in the future will be spared years, decades, of suffering when we fully educate people, medical doctors, governments on the reality of this terrible disease.

Many thanks for your dedication and commitment.

 

Thanks all for the feedback. I’m at the start of a steep learning curve, especially when it comes to different camps/interests etc among various charities and groups.

I need to be really careful to ration my thirst for knowledge right now. Feeling increasingly delicate today. Think the payback for this week is beginning. Time to try and dial it down for a few days but I will keep popping in to lurk-and-learn, I promise. x

 

Nigel Speight would be excellent- someone who knows the true nature of the illness and the hell that children and families endure.