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

I was incommunicado for the first 10 years of ME, Very severely ill, but when I could be online, I made sure I was damn well informed before presuming to go public...... I did huge amounts of research to inform others (which is still being quoted today)...... I did NOT presume to write anything until I had bothered to inform myself.

Sorry..... but right now in 2018..... 20 years after the Chief Medical Officers So Called Working Group .....was supposed to help us...... with the help of AFME and their so called reps from the Sussex Group, accolytes of the Vice Chair of the CMOs Group.......

Peeps who are informed by AFME are enabled to get publicty..... this is a long history of AFME....... . but they are not the most informed or astute advocates...... we have seen it before over years..... sweet, nice, stuff from AFME ..... whilst AFME continuing supporting thebPACE Trial reachers and Dr Esther Crawley


REALLY. I think that Gary did a good Job

BUT. We neeed much more politically astute future radio and tv stuff.


PLEASE Remember, loads of us do not have the time of life left"

 

Yet, you don't want him advocating for us?

And how do we get that? Merely stating it will not make it happen.

Which supports my point more than yours surely?

 

I have been doing politically astute, really well reasoned stated, advocacy for over a decade.

I have advocated to MPs, to Members of the House of Lords, My advocacy has been quoted to Members of the House of Lord

My Critique of Lighting Process was the first to warn ME suffers in 2005.


I DO NOT APPRECIATE any suggestion that informed, astute statements by veterane ME advocates are informed by 'anger'

 

Dear @Nancy Blackett,
I think you are digging yourself into a hole and it is making us all sad.

I think it was me that first used the word 'angry'. I am very angry about the way my colleagues have treated people with ME. I find it weird to think that people with ME are not even more angry once they are aware of what has been going on. Surely, it is normal. I actually think everyone in the UK should be very angry about what is going on in the NHS at the moment, whatever illness they might have experience of.

I suspect pretty much everyone here, contributing to a reasoned debate, is agreed that AfME have been unhelpful. I suspect everyone is also agreed that Gary Burgess has done his best to be helpful. Isn't that the end of it?

 

I'm not to sure what's going on, but I have to say that your posts do come across as angry to me too Nancy. If that's not the case, then I think it is that you are writing in a way which makes it easy for people to misinterpret you.

It is difficult for anyone to get advocacy matters 100% right. I don't think that anyone manages it. It's good to try to point out where we think that others can improve, but it's also important to be understanding of any problems, aware that there are many areas of legitimate disagreement, and aware that our own views are likely to be based on some misunderstandings that we will need others to correct us on.

 

There are many different ways to advocate, and it isn't sensible or fair to criticize someone for failing to do it in every conceivable way or a certain preferred way. You can do it your way, they can do it theirs. It isn't doing you or anyone else any harm.

And while I think AfME has very many serious faults, they seem to be due more to stunning ignorance regarding scientific methodology and a focus on political ass-kissing than any desire to harm patients. AfME is useless and even counter-productive, but they are not evil, and the patients and other people who associate with them most certainly are not evil or even culpable by association.

A good way to come across as less angry is to avoid using caps. They're the text-based equivalent of shouting, and will usually be interpreted as anger, even if that is not your intention.

 

Everybody. Stop. Draw a deep breath. Please realise internal arguments are literally a waste of energy.

Let a new day dawn and then resume this conversation in a healthy, calmer fashion.

I understand where years, nay decades, of anger and frustration comes from - but the pages of it here are helping precisely nobody and nothing. ❤️

 

Yes it is. But my own posts on the 'other forum' were met with less than cherished embraced when I raised the issue about righteous anger last year. I wish more pwme *were* angry. In the same way ACT UP was borne from anger.

 

Thank you for being understanding, Gary.

Yes, let's let that new day dawn...

 

A very warm welcome to S4ME @Gary Burgess it's great to have you here with us

I thought the show was great, though a pity that the question was not answered. Maybe ask our very knowledgeable prof @Jonathan Edwards to appear next time?

Wishing you lots of luck for your forthcoming wedding, I hope you manage to rest enough to enjoy your special day to the fullest.

 

Sometimes people just need to vent, there is so much hurt and pent up anger from the medical neglect and injustice. You will be shocked and horrified when you hear of many of the horrors endured by both adults and children. The suicide rate is beyond shocking, due to having no hope for anything changing in the future.

So, that's why I try not to be upset when people need to vent, to let out some of the hurt and anger. It's healthier than keeping it bottled up.

 

My view is that perfect is the enemy of good... and to hear this discussed on BBC national radio in the way that it was presented was pretty damn good. And a hell of a lot better than I would manage if I was trying to summarise the myriad of different issues surrounding ME/CFS. Similarly, Julia Newton is somebody who has always had the interests of patients at heart whilst working in a challenging research environment so I prefer to focus on that than nitpicking over every possible misspeak.

@Gary Burgess - I doff my metaphorical cap. Glad to hear you're working on more media stuff and hope you find some of the stuff on the forum useful. Don't push yourself too hard and good luck with the wedding!

Right, and with that I'm back off to torture myself by watching the rest of the Arsenal game...

 

My wife has had ME over 10 years, and it was only 18 months or so back I realised the weird situation PwME are in, especially as the PACE trial is home grown and has screwed things up for PwME all over the world. There is a major learning curve I found, on various fronts. I'm not a scientist, and there are people here on S4ME know far more than I will ever know. Also the history, politics, bad science, media manipulation ... all tangled together. In your advocacy situation, there are things that will benefit everyone for you to learn, and other stuff you won't need to know unless you particularly want to. It's going to take a while to find your way. But you have joined a seriously resourceful forum here, with stacks of support. You have also joined at an exciting time, because things really are starting to happen, and you are one of those things!

Worth you looking at @Trish's News in Brief forum https://www.s4me.info/forums/weekly-me-news-in-brief.102/

 

Being angry is one thing, and I agree it can be a constructive driver of good endeavours. But it can also be very destructive. I'm only interested in the constructive sort, as I'm sure you are @Lilpink.

 

Yes, I agree!!! If anger leads to constructive action, then lets all be angry.

To add to this train of thought...

For the handful of ME advocates fighting for us, especially ones with ME, let’s agree to avoid directing our anger at them. I feel it’s a better use of our energy to educate and encourage ME advocates, in the hopes of getting more onboard to help us.

 

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The subject of this thread is:

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

Any further off-topic posts will be deleted.

 

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

 

Great, Gary - why not start a new thread on that so people can see the news? (A lot of people won't now be following this thread, which has wandered off down all sorts of side-avenues.)