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ME/CFS (CFS/ME!) on BBC "Today" Programme NOW - can anyone tune in

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charles shepherd

Senior Member
Messages
2,239
A.B. said:
Will the ME Association say nothing to avoid coming across as unreasonably critical and playing into the harassment narrative, thereby fulfilling the purpose of the harassment narrative?
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Nonsense!

If you have been following this story from the beginning you will know that the MEA opposed the SMILE trial in the first place and we have been very critical of the Lightning Process for a number of years - this has involved formal complaints to both ASA and Trading Standards about unproven therapeutic claims

We produced a press release yesterday that was very critical of the SMILE trial and we also spent a great deal of time contacting health journalists and other media outlets to explain our position

We were asked to contribute to the 'Today' programme this morning but this offer was not then pursued - for reasons that have not been explained

I have just sent a strongly worded letter of complaint regarding the seriously inaccurate statement about the MEA position on research into cause and management of ME/CFS in children to Tom Feilden (Science Editor at BBC R4 Today)

Just because we are a member of the Board of the CMRC does not mean that we are unable to criticise or complain about research that has been carried out by another member of the CMRC Board when necessary

If we were prevented from doing so we would not be a member of the Board of the CMRC

CS
 
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anniekim

Senior Member
Messages
779
Location
U.K
Shetalks about how exercise reduces inflammation (generally, not in ME - she is hypothesising why it might work)
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Don't want to listen to show, too ill to cope. So, as expected, Crawley does not acknowledge the abnormal response to exercise in pwme? Was she saying that LP makes patient increase exercise/activity and as exercise reduces inflammation - ignoring opposite in ME - this is maybe why patients improved (by subjecting measures)? Dangerous lies.
 
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TillyMoments

TillyMoments

Messages
18
Can anyone enlighten me in the BBC program the girl named Ann (not her real name) said that at the age of thirteen she had glandular fever and then had a secondary infection in the glands of her neck. These glands were taken out. My question a) if she had not had glands taken out and was put on a trial what would the outcome be? b) what happens to your body when your neck glands are taken out? op recovery and immune system?
 
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Philipp

Messages
80
So when someone is worried about sick children being made victim of psychological violence, that means they do not support research into sick children in general. Interesting.

What is she talking about with the exercise and inflammation stuff? Inducing muscle remodeling is technically an inflammatory process. This is triggered by exercise. That is why NSAIDS and high dose antioxidants slightly reduce adaptive training responses (when taken at the correct time to do so).
The inflammation that is subsequently lowered after exercising is the inflammation that was triggered by said exercise, so this would be kind of like saying 'eating lowers your blood sugar' - technically correct, but without context pretty meaningless.
So, really, what is she talking about? Something like more BDNF as a response to running which can help lower the inflammatory response in depression? Why would this matter for people with ME?
 
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TillyMoments

TillyMoments

Messages
18
Cheesus said:
They have two guests. Crawley and "Anne", who is an ex-ME sufferer that is about to conduct research with Crawley. She doesn't want to use her real name because she is fearful of abuse. She had EBV onset at the age of 13. She had SMC and activity management under Crawley, which she says was very helpful.

She doesn't feel able to reveal her identity because she "knows about the abuse people get for researching the condition".

Crawley says 1% of children missing a day of week at school. Field is desperate for better treatments. She did the research because children kept asking her about its efficacy.

She is being challenged as to why some people thought LP was a bit flaky. She said she didn't think it would work. She says we understand more now about the link between the brain and the body. She talks about how exercise reduces inflammation (generally, not in ME - she is hypothesising why it might work).

She says that ME Association says that children with ME shouldn't have research (seriously). She says we have to do research because they are different to adults with ME.

Back to the abuse. Crawley says she doesn't know why researchers are abused. She says people feel neglected and angry and that has spilled over into abuse. She says it is a tiny minority of patients that abuse (read: tribunal found no evidence of abuse at all).

That's it.
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Ann was not in time for the trial and was just put on normal treatment. At the beginning she explained that she had glandular fever and had her Lymph nodes removed. So Ester could not find a single person/child to say how goon the LP was ever after four years? and was it the removal of the lymph nodes that solved or caused the fatigue?
 
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Barry53

Senior Member
Messages
2,391
Location
UK
bertiedog said:
I guess this is EC's fightback against all the recent biomedical research findings from several quarters around the world that ME/CFS involves a block in our energy metabolism which can cause all the symptoms we suffer from. Absolutely zero to do with what our attitude towards our illness is and definitely nothing that exercise can fix.

Pam
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I know, her guile is amazing. Talking about how exercise can help reduce inflamation and how too much can increase it. I'm not qualified to say if that is true or not, but even if it is it's a sudden new angle she's using to try and validate her stuff in the light of latest biomedical thinking.
 
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Barry53

Senior Member
Messages
2,391
Location
UK
Valentijn said:
I was thinking that as well. She is harming the MEA's reputation with her accusations.
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At the very least there is more than enough to demand an apology, given how public and unequivocal it is. And if that sounds like a minor admonishment for her ... can you imagine how much that would stick in her craw to have to apologise! She just doesn't do apologies.
 
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Londinium

Senior Member
Messages
178
(Just my two cents, as I really don't want to rehash the 'should the MEA be on the CMRC' debate again)

So without reopening the debate on whether they should be there on the first place, my view is that the MEA being on the CMRC does provide an opening here: It's fairly easy to show that claim as demonstrably false by simply asking 'how can we be anti-research when we sit on a research collaborative that you're Deputy Chair of?'

The Today Programme should be asked to retract a demonstrably factually inaccurate claim made unchallenged by one of its guests.
 
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Londinium

Senior Member
Messages
178
Barry53 said:
Talking about how exercise can help reduce inflamation and how too much can increase it. I'm not qualified to say if that is true or not, but even if it is it's a sudden new angle she's using to try and validate her stuff in the light of latest biomedical thinking.
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Yes, lip service has been paid to an inflammatory cause. I was trying (and possibly failing) to get this point across yesterday to an attendee of the meeting: whilst the BPS researchers may claim they've never viewed this as psychosomatic, can you think of any other illness where this kind of research would get ethical approval? Would you really be able to propose a trial in which kids with a different inflammatory condition, say arthritis, are sent on course where they learn to scream 'stop' at their symptoms? We know the answer is no.
 
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charles shepherd

Senior Member
Messages
2,239
Londinium said:
(Just my two cents, as I really don't want to rehash the 'should the MEA be on the CMRC' debate again)

So without reopening the debate on whether they should be there on the first place, my view is that the MEA being on the CMRC does provide an opening here: It's fairly easy to show that claim as demonstrably false by simply asking 'how can we be anti-research when we sit on a research collaborative that you're Deputy Chair of?'

The Today Programme should be asked to retract a demonstrably factually inaccurate claim made unchallenged by one of its guests.
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As already reported above, I have sent an email to Tom Feilden at BBC Today programme saying that a serious and inaccurate accusation was made about the MEA position on research involving children with ME/CFS and that a correction needs to be made on the Today programme tomorrow

No response so far….

CS
 
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