George Monbiot on ME/CFS, PACE, BPS and Long Covid

Yes, @Hutan "secondary benefits".
Like the one where pwME are treated like pariahs for life.
That's a "good" one.



Cheers,

 

Writing about, or having cancer, heart disease, and any other disease you can think of, is not blamed for spreading these diseases.

Hmmmm......

Should people not attend support groups for any disease, for fear of perpetuating their ill health?

 

I was told I was developing symptoms of MS because I went to an MS group. This was an extreme example of misunderstanding the arrow of causation because I went to the group because I had neurological symptoms. My ME has always been very neurological with paralysis, episodes of blindness, aphasia and so on, so I went for hyperbaric oxygen when I could no longer feed myself because of ataxia. I had less symptoms after meeting all these people with MS.

 

Video: Owen Jones & George Monbiot: on capitalism, the climate crisis, defying establishment journalism - and hope [includes ME/CFS]

"George Monbiot is one of the most important progressive writers of our time. We talk about what it's like being a progressive journalist in the establishment media, about whether the climate emergency can possibly be solved under capitalism, about how public understanding of the crisis has changed, how our lakes are being destroyed and our ecosystems butchered, the legacy of colonialism, long COVID, the pandemic and much else."

Code:

https://youtu.be/DRbigmBSX3Y

https://www.youtube.com/watch?v=DRbigmBSX3Y

For those who want to only listen to the part that addresses Long Covid and ME/CFS, jump to 34:15, where George talks for 5 mins mainly about ME/CFS, the BPS lobby, the SMC and more.

 

George Monbiot, if you ever read this, i want you to know i was moved to tears by your comments about ME/CFS. I felt so defended & cared about.

Thank you, from the bottom of my heart.


Edited: Typo only noticed when i was quoted

 

I sign this.

George Monbiot was spot on.

 

Monbiot's birds eye overview of ME is one of the passionate presentations I've seen! His own 14-week bout of long covid and having two friends with ME have given Monbiot a huge passion for our dire situation.

Could we use this portion of the interview to promote awareness?

Some quotes:

"ME/CFS which is a disease ......that has been maligned and misrepresented on an industrial scale."

"That is how women's medicine is treated, it's not science it's misogyny .......This almost knee jerk reflect that says it can't be true, it can't be right, because it's mostly women suffering from it, they're not rational are they? They must be making it up"

"As it happens I've got two old friends with ME/CFS., both of them who were the most active, engaged people who embraced life, who just had so many plans and ambitions and were doing so much with their lives and suddenly (claps), following a virus both of them - bang -got knocked down."

"And they are so desperate to get on their feet, they would give anything, anything, to get out of their bed, and get on with their lives, their work and their children and all the things they want to engage in. And literally much of their lives are spent lying on their backs and staring at the ceiling because that's all they're capable of doing."

"And now they're being told they're malingerers, this is a fake illness, it's not happening to you, it's all in your head! Talk about gaslighting. This is the definitive example of gaslighting."

"There's a group of, in some cases quite eminent professors, mostly men, who've been putting this idea around that it's all fake and it builds on itself because the Department of Works & Pensions has been promoting their work because then they can get out of paying disability benefits ........... and the medical insurer companies they love them too because they don't have to pay out, if it's all in their heads."

"I think it's one of the greatest medical scandals of the last century, the way that this massive illness or series of illnesses of post viral syndromes.......have been denied and downplayed, it's just like climate denial, it's really similar, very similar rhetoric, sometimes the same people involved........."

And believe it or not, I left out some of the stronger wording!

Edited to slightly change wording in bold & spelling.

 

Great job on the transcript Helene thank you - if it's used for advocacy we'll need to correct the typo here

should be eminent....

BPSers Imminent shudder lol

 

Thanks @JemPD Changed to eminent

If any-one wants to use this let me know and I can do a full transcript easily. It's at least twice as long as I quoted.

But I think using the actual video would be far more effective as it's the passion that Monbiot himself shows that is super powerful.

As @Andy says above, Monbiot addresses Long-Covid and ME/CFS starting at 34:15 on the video.

 

Video link at time 34:07

 

Wow, that was very well put wasn't it?

George Monbiot managed to cover an awful lot of ground in a very short space of time without getting bogged down in the details.

I'm not great with audio but that was well worth a listen.

 

@JemPD I have ‘sent a message for you’

https://twitter.com/user/status/1418503950177800193

 

He goes on to say:

“…it's just like climate [change] denial. It’s really similar. It’s very similar rhetoric – sometimes the same people involved, especially the people at the Science Media Centre, some of whom came out of the Living Marxism network who were fighting culture wars long before anyone knew what a culture war was, and had a slogan which is that you should not listen to the victim, and suddenly they find themselves in this position of communicating science, and they managed somehow to sort of – through their vanguardism, their entryism – to occupy all these key positions in the communication of science, and have managed to steer the debate in that way. It’s deeply disturbing.”

 

Thread of images of quotes from George.

https://twitter.com/user/status/1418475615557017604

 

Just listened to this the whole way through. Shame we can’t discuss politics here (although I agree with the policy) because George raises some interesting issues.

I was very impressed with George’s Guardian articles because he got all the arguments spot on in my view and he didn’t make any missteps by saying things that the BPS enthusiasts could use against him.

Although I was very pleased that he brought ME/CFS into this conversation, and I agree with most of what he said about it, I also thought he made a mistake by suggesting that the eminent professors think it’s “fake” or all in our heads. SW et al love to respond to those sorts of arguments, so I hope George will be more careful with his arguments and terminology if he returns to writing about it, which I understand he intends to.

Also very pleased to see him raising these issues – and particularly the malign influence of the SMC and former RCP/LM members – with a new audience, many of whom will be Guardian readers. It’s a scandal that the Guardian of all papers has been on the wrong side of ME/CFS issues for so long, and I hope this will help more of its readers and journalists to wake up to what’s been going on.

[edit typos]