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

Bump, programme just about to start, I don't know when the content of ME will be within the 3 hour programme though.

 

Sounds like the first hour will feature the ME content.

 

Finished for now, back to the subject in 75 mins (15:15 UK time).

 

Humble pie time...........
surprisingly very good program (couple of factual inaccuracies).
Even managed to bring in the PACE trial a couple of times.

 

It was a mixed bag. They didn't even try to answer the question they posed. Julia Newton in turns frustrating and then useful.

I don't think any acute onset viral type patients mentioned

Only 1 patient call starting speaking about important issues

 

Yep, I agree, I think Gary has been great so far, the programme host has helped as well. And so far the focus more so on the social injustice side of things has been a good way to go at things. I'm not sure what to make of Julia Newton's contributions though.

 

I’m happy to be corrected - but if I remember correctly all Julia newton said was that the ME/CFS field is not united and that patients, researchers and clinicians are in conflict.

This is demonstrably true, though it does not tell the whole story. I know that this may touch a nerve with many because it hints at the ME militant patient narrative, but what was actually said is fairly mild and didn’t really say that at all. I can already see people going off about this on Twitter...but I read it as someone saying as diplomatically as they can, given her position, that there isn’t enough agreement and that we all need to pull in a similar direction.

Anyway I thought it was ok. I think that it’s slghtly problematic to have someone like Gary whose level of illness backs up the health minister’s recent “sufferers can be bedbound for days or weeks”, but then if he was more severely affected he wouldn’t be well enough to do the show, so I think you have to make that concession.

 

https://twitter.com/user/status/968845047834730497

 

I think Julia Newton was perched very carefully on a high fence there.

She said (& Im paraphrasing): clinicians, researchers & patients get quite angry with each other.
True, but a little ambiguous - could be read as patients getting angry with the others, but that's not actually what she said. Very cautious wording.

 

I wonder about Gary's view - whether he is seeing opening the door for others to make /raise the points. His own approach was quite softly, softly but when Anne (?) called in and spoke about PACE there seemed some agreement that I think came from him.

 

I did pick up on him saying that after a couple of hours sleep( in the afternoon) he 'recharged his battery', which does go against 'unrestorative sleep'.


Re Julia Newton:
I wish that more people would actually say that the reason we are where we are is because of Simon Wessely and his 'followers' rather than trying to be so diplomatic (this particularly applies to AfME and MEA who tend to be the ME charities invited to participate in these type of progs).

 

That was the comment that stood out to me actually as well. I’ve never (Ill or healthy) been able to sleep during the day, but I assume that if it ever happened now I’d just feel groggy and possibly in slightly less pain, but who knows. Certainly my overnight sleep doesn’t restore me.

 

I agree. My understanding is that there is not any conflict between patients clinicians and researchers. There is just a conflict between most of the patients, together with the great bulk of international researchers, and a particular British cartel of researchers, with some cronies in Holland and Scandinavia, who have been putting out poor research for reasons of politics and personal advancement. That situation is now crystal clear to me. It would help if Dr Newton made it clear that it was crystal clear to her too.

 

Annie (the patient who phoned in) was the first useful voice. Prof Newton touched on some important points but could have done better. She blamed things on infighting.

Annie mentioned the abnormal blood flow, then the lobby on behalf of the psych trials. Blamed Wessley for PACE and said discredited. Touched on NICE guidelines. Said graded exercise ungenerous. Heard someone say "spot on" and guessed that was Gary.

 

With reference to Gary's comment about sleep -

At different times in the course of the illness I have needed to do certain things and sleep during the day is something I've often needed.

At one point I remembered being challenged about this in a benefits assessment - if it doesn't make you feel better, why d'you need to sleep during the day.....

It was only years later when someone else made the comment that sleep didn't make them feel better, it just stopped them feeling worse that I thought - exactly!!!

Newly ill and cognitively challenged people may struggle to remember precisely and describe what happens to them when they are most cognitively challenged.

 

https://twitter.com/user/status/968842731178086401

https://twitter.com/user/status/968849209398104069

 

Jonathan, if you phoned in and said exactly that, it would be gold dust. In fact if anyone posting here based in UK phoned in and said some of the harsh truth, it would be gold dust.

 

Another question Gary should be asking is why the British media (England in particular) have been so quick to spread the message that 'ME is all in the head' (way past the 'Yuppie flu' era), eg the 'exercise and positive thoughts' headlines, coverage of the SMILE trial,
and yet have given precious little coverage of any of the other biomedical research, the fight to get NICE to change the guidelines, #millions missing, Unrest, etc etc

 

I've been sending them text messages but nothing mentioned.

They don't even seem to be trying to answer the question Gary raised and how got stuck with the new and not severely affected patients and how they feel

Terrible so far with only the odd glimmer. They haven't focused it right

 

The quote from Jonathan would be a great one to add to the Twitter discussions going on, if someone can. If I did Twitter I would do it but I don't, so I can't.