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

Welcome @Gary Burgess!

I think you did a great job and love the podcast idea.

We do understand the monumental effort involved in what you have done. Thank you!

Please don't take any of the criticisms personally, they are not meant that way. ME has such a long history of stigma, abuse and neglect that it would be impossible to get the whole thing across in one go. Especially when also trying to balance engaging people and educating them.

We may be quick to point out where we think something is wrong, but I reckon you'll find we'll also be quick to offer help and support for projects too.

Please don't push yourself too hard. It's so easily done! Congratulations on your upcoming wedding!
 
Hi Gary..... I am glad that you tried to get publicity for us. That radio broadcast was so good. Well done.

I do advise that you take advice from the long term sick pwme, the long term uk ME advocates before doing a podcast.

So many of us do NOT have the time for 'Baby steps'. We have seen our lives disappear over decades of severe ME whilst the 'Nicey nicey' approach by charities such as AFME try to pacify us, whilst actually alienating and disenfranchising us. We no longer expect any improvement in the UK research or treatment policy within our lifetimes!

If you wish to help us, I suggest that you disengage from Action for ME ..... and engage with the long sick, and very experienced, massively informed and astute patients and advocates who you will find on ME forums and ME political facebooks..

AFME is not the best guide for helping ME sufferers. I say that as an ex AFME member... AFME, over the years of my membership, clearly did not recognise either severe ME, or that severe ME sufferers can be, and are medically abused.

I do not want sympathy. I want CBT/GET and and psychiatric treatment policy to be removed from UK ME treatment Guidelines.

That includes NICE and the insidious nationwide psychosocial MUS rollout.. which is the next policy which will keep us classified as psychosomatised mentally sick..

MUS .. it is a gaslighting policy. It is supposed to save the NHS money. It will not. The MUS policy will create an epidemic of non diagnoses of serious medical conditions. PWME have been warning about the fiction MUS construct for over a decade.

So many of us who have done ME Advocacy over so many years..... we now see that we we wont live long enough to see an effective, or even humane UK ME treatment Policy ...... A policy that is not actually abusive,


Edit

As a former Action for ME member ....... I cannot see AFME doing anything other than sitting on the fence, and saying nice words ....

AND Leaving severely sick and disabled sufferers, and parents of severely sick kids either unsupported or actually PERSECUTED by medical services!
 
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I think a lot of these posts seem to be looking at this as a black and white issue.

Yes we would like to CBT/GET to be removed.
Yes we would like the Wessely group of practitioners to face the music for the harm they've inflicted.
Yes we would like effective treatment as soon as possible.
But that doesn't mean that other advocacy efforts aren't valid?

It was really fantastic that Gary was able to get this spotlight on a big radio station in the UK. It's not going to solve things overnight but all these little pieces help. It's one of the reasons I now put the little money I can afford to donate towards advocacy groups - I feel by making our voices louder we ensure that government, medicine and even just society as a whole take more notice of us.

That means leading to biomedical funding and a removing of the stigma around the illness. At a very basic level, it could lead to people in one's circle of acquaintances having just as much empathy for an ME/CFS patient as they do for a patient with a more known serious illness. Without awareness, we are nothing.
 
Dr Carrot said:
Without awareness, we are nothing.
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I agree, but there have been times, when a newspaper article or something has come into the public eye, where publicity has actually made matters worse. That has caused previously empathetic friends or family members who mean well to start pushing people towards therapies they don't want, won't help and may harm them, such as exercise or the lightening process.

I think Gary has done us a lot of good, but I also think people's concerns are justified - especially those how have lived through the experience of awareness going wrong.

Does anyone remember Barbara Windsor's comment about it being one of those you have to pull yourself together sort of thing? Of course she was ill for a fairly short space of time.

Then there was Yvette Cooper misquoting Dr Weir by saying most people will recover in a year. He actually said most people who are going to recover will have recovered within a year (paraphrasing). It may seem innocuous, but when we desperately want research and funding and a recovered ME patient and MP says that....why would you invest if people just recover of their own accord within a year?
 
Nancy Blackett said:
If you wish to help us, I suggest that you disengage from Action for ME ..... and engage with the long sick, and very experienced, massively informed and astute patients and advocates who you will find on ME forums and ME political facebooks..
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I couldn't agree more Nancy and Gary. AfME are part of the problem, not part of the solution. Their cynical abuse of pwme is more than worrying. To be taken seriously by the ME community it is essential to have nothing whatsoever to do with this charity.
 
Invisible Woman said:
I agree, but there have been times, when a newspaper article or something has come into the public eye, where publicity has actually made matters worse. That has caused previously empathetic friends or family members who mean well to start pushing people towards therapies they don't want, won't help and may harm them, such as exercise or the lightening process.

I think Gary has done us a lot of good, but I also think people's concerns are justified - especially those how have lived through the experience of awareness going wrong.

Does anyone remember Barbara Windsor's comment about it being one of those you have to pull yourself together sort of thing? Of course she was ill for a fairly short space of time.

Then there was Yvette Cooper misquoting Dr Weir by saying most people will recover in a year. He actually said most people who are going to recover will have recovered within a year (paraphrasing). It may seem innocuous, but when we desperately want research and funding and a recovered ME patient and MP says that....why would you invest if people just recover of their own accord within a year?
Click to expand...

I agree! I suppose I was saying that any awareness based on facts is good, and that not all advocacy has to be leaps and bounds, more just a series of small steps that build a more informative picture.
 
@Nancy Blackett, I agree with you about AfME, but give Gary a break, he is new to the whole ME disaster area and he's already doing a great job with advocacy. It takes time to get up to speed with what's really been going on for the last 30 years. I've had ME for 28 years. For most of that time I read the AfME newsletters and MEA website and magazine and took them at face value as working in the best interest of patients.

I had no idea what lay behind it all until about 3 years ago when I went on a very steep learning curve through reading some material about the background of PACE on the IiME website, and mainly through joining forums.
I can now see very clearly how badly AfME have served the ME community and the cause of better research and treatments over many years, even supporting the PACE trial and giving it legitimacy of patient involvement while the MEA was trying to fight it.

Members of both patient organisations mostly are simply and completely in the dark about all this. I am disappointed that the members of the MEA and AfME are not routinely and often told about forums, especially this one - I'm sure a lot of members would really value being here, both for mutual support and to learn more and get involved in advocacy if they are able and want to.
 
Dr Carrot said:
I agree! I suppose I was saying that any awareness based on facts is good, and that not all advocacy has to be leaps and bounds, more just a series of small steps that build a more informative picture.
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I think you're right. We need to bear in mind the target audience. When engaging with the general public and those with no prior knowledge, shoving too much at 'em in one go is as likely to cause them to switch off as to engage them.

Hopefully, if you can catch their interest, they might be prepared to hear a bit more.
 
Invisible Woman said:
I think you're right. We need to bear in mind the target audience. When engaging with the general public and those with no prior knowledge, shoving too much at 'em in one go is as likely to cause them to switch off as to engage them.

Hopefully, if you can catch their interest, they might be prepared to hear a bit more.
Click to expand...

I think this is key - and not helped by PACE not being quite as simple as "it was really harmful to those with the illness". Of course, we know that it was, but one also needs to explain double-blinding, outcome-switching, the importance of objective measures etc etc. It all seems very obvious to a layperson once that is explained, but getting there is often the battle.

This is a really interesting conversation about wider advocacy efforts and I'd love to discuss further as I've much to say, but I will finish in order to stop derailing this thread more than I have :)
 
Nancy Blackett said:
If you wish to help us, I suggest that you disengage from Action for ME ..... and engage with the long sick, and very experienced, massively informed and astute patients and advocates who you will find on ME forums and ME political facebooks..

AFME is not the best guide for helping ME sufferers.
Click to expand...
I agree. This message that I have posted elsewhere:

https://www.s4me.info/threads/rethi...l-of-graded-exercise-and-cbt.2282/#post-41444

is an example of what I wrote to AfME - in 2011 soon after the PACE report came out - but received no reply, and as far as I recall AfME continued to support the researchers of that study for a long time.

I used to be a member, but also left.
 
Trish said:
@Nancy Blackett, I agree with you about AfME, but give Gary a break, he is new to the whole ME disaster area and he's already doing a great job with advocacy. It takes time to get up to speed with what's really been going on for the last 30 years. I've had ME for 28 years. For most of that time I read the AfME newsletters and MEA website and magazine and took them at face value as working in the best interest of patients.

I had no idea what lay behind it all until about 3 years ago when I went on a very steep learning curve through reading some material about the background of PACE on the IiME website, and mainly through joining forums.
I can now see very clearly how badly AfME have served the ME community and the cause of better research and treatments over many years, even supporting the PACE trial and giving it legitimacy of patient involvement while the MEA was trying to fight it.

Members of both patient organisations mostly are simply and completely in the dark abou
Trish said:
@Nancy Blackett, I agree with you about AfME, but give Gary a break, he is new to the whole ME disaster area and he's already doing a great job with advocacy. It takes time to get up to speed with what's really been going on for the last 30 years. I've had ME for 28 years. For most of that time I read the AfME newsletters and MEA website and magazine and took them at face value as working in the best interest of patients.

I had no idea what lay behind it all until about 3 years ago when I went on a very steep learning curve through reading some material about the background of PACE on the IiME website, and mainly through joining forums.
I can now see very clearly how badly AfME have served the ME community and the cause of better research and treatments over many years, even supporting the PACE trial and giving it legitimacy of patient involvement while the MEA was trying to fight it.

Members of both patient organisations mostly are simply and completely in the dark about all this. I am disappointed that the members of the MEA and AfME are not routinely and often told about forums, especially this one - I'm sure a lot of members would really value being here, both for mutual support and to learn more and get involved in advocacy if they are able and want to.
Click to expand...
Trish said:
@Nancy Blackett, I agree with you about AfME, but give Gary a break, he is new to the whole ME disaster area and he's already doing a great job with advocacy. It takes time to get up to speed with what's really been going on for the last 30 years. I've had ME for 28 years. For most of that time I read the AfME newsletters and MEA website and magazine and took them at face value as working in the best interest of patients.

I had no idea what lay behind it all until about 3 years ago when I went on a very steep learning curve through reading some material about the background of PACE on the IiME website, and mainly through joining forums.
I can now see very clearly how badly AfME have served the ME community and the cause of better research and treatments over many years, even supporting the PACE trial and giving it legitimacy of patient involvement while the MEA was trying to fight it.

Members of both patient organisations mostly are simply and completely in the dark about all this. I am disappointed that the members of the MEA and AfME are not routinely and often told about forums, especially this one - I'm sure a lot of members would really value being here, both for mutual support and to learn more and get involved in advocacy if they are able and want to.
Click to expand...

t all this. I am disappointed that the members of the MEA and AfME are not routinely and often told about forums, especially this one - I'm sure a lot of members would really value being here, both for mutual support and to learn more and get involved in advocacy if they are able and want to.
Click to expand...


Sorry, but I so nearly died from ME and medical neglect, and social care neglect, so many times in the early years, to be 'nice' to well meaning peeps, who do NOT RECOGNISE the Political force behind the persecution of physically sickally disabled disabled peeps with MYALGIC ENCEPHYOMYELITIS. The WHO classified Neurological Physical disease
 
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I am sorry.... There is no 'Black and white'.... It is actually Life and Death.
There are too many ME deaths to continue to be 'nicey nicey'...... to continue to try to collaborate with the charities who themselves collaborate with the PACE trial resesrchers..... who collaborate with DR Esther Crawley ... who collaborate with the incoming MUS policy.

I am sorry, but "giving a break " to certain people who want to go public whilst not fully informed ......

can you possibly comprehend how that sounds to us severely sick peeps with ME..... those of us who have been medically abused out of the NHS......

Those of us who are too terrified to go to GPs because of previous medical abuse? ....

. The children and parents of kids with MEwho are STILL being persecuted by social services, education services and local GP s services?
 
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Nancy Blackett said:
I am sorry, but "giving a break " to certain people who want to go public whilst not fully informed ......

can you possibly comprehend how that sounds to us severely sick peeps with ME..... those of us who have been medically abused out of the NHS......

Those of us who are too terrified to go to GPs because of previous medical abuse? ....

. The children and parents of kids with MEwho are STILL being persecuted by social services, education services and local GP s services?
Click to expand...

I myself am severely affected, and would not have known what I do now about the political issues surrounding ME without months, perhaps over a year of reading.

It is unreasonable to expect someone relatively recently diagnosed to fully grasp all of this and to express it eloquently covering all the bases all at once, particularly within the stop start medium of radio.
 
Nancy Blackett said:
I am sorry, but "giving a break " to certain people who want to go public whilst not fully informed ......

can you possibly comprehend how that sounds to us severely sick peeps with ME..... those of us who have been medically abused out of the NHS......

Those of us who are too terrified to go to GPs because of previous medical abuse? ....

. The children and parents of kids with MEwho are STILL being persecuted by social services, education services and local GP s services?
Click to expand...
So when and how do we determine someone is fully informed enough to act acceptably as an advocate? I would much prefer to try to work with Gary, someone who has enough energy to work as an advocate for us all, as well as media contacts, and media experience, than wait around, hoping that someone else educates themselves to an acceptable yet undefined level, and still has sufficient energy after all of that, to appear to work as an advocate for us. And if that means giving him a break for not knowing some of the finer detail, then yes, I'll do that. Doesn't mean that I won't comment on things that I'd like to see handled differently, but I certainly won't reject him, or anybody else, out of hand for not being educated enough.
 
As I see it:

Gary is obviously media savvy and has connections. Being newly ill, those connections and contacts are still in place, but being newly ill he is unlikely to grasp the full political, financial, medical and social complexities. Who could?

On the other hand, we have the experience, the knowledge of the condition and all it's issues and could do really use the help of someone who is media savvy and has connections.

Gary has shown he is prepared to reach out and learn. We can support him, answer his questions, make him aware of the pitfalls.

Edited - crossed with Andy, who put it much better :)
 
I’m not great at present so please forgive any errors.

My mind is unclear too...to be honest I’m really struggling, and due to PACE trial, and NICE and newspapers running stories of how exercising and positive thinking can cure this awful illness, I am just stuck with trying the best that I can as I won’t go to GP for anything ME related due to GP lack of knowledge and blindly following NICE guidelines.

Anyway, what stood out to me was AfME. I think Gary will do very well as an advocate if he ditches AfME and liaises with you guys on here.

I’ve had ME 12 years. I’m not getting better. Housebound last 2 years. I only learned the shocking truth of history of ME in last year...utterly shocking.

Sorry if I went off topic, my mind is shattered.
 
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