"You and yours" BBC phone in on "chronic fatigue" -26 sept

[Jenny TipsforME]

So the better strategy would be for us to big up the NICE decision and ignore the LP-bullshit untill it get's scientifically disseminated?

Yes to big up NICE decision. LP is a bit more complicated I think. Official orgs need to put forward sensible arguments against it, but in terms of us as individuals I think it can muddy the water to discuss it too much.

 

[Snowdrop]

I think the best tactic is always to do what we want to do. If we think something is worth fighting we fight it. Trying to second guess people such as these is rather pointless. If this is what advocates have been doing then it hasn't worked yet has it? 'Zero tolerance' is always the best strategy for everything imo .... just be glad none of you are married to me!

I still think the best advocacy advice comes from Peter Tatchell.

https://www.youtube.com/watch?time_continue=6&v=caJNi6K8VdI

Where's a real investigative journalist when you need one?

Let's not forget David Tuller.

To indicate the ludicrousness of the lightning process maybe we should suggest an enhanced version where we use coloured paper on the floor. I am sure colour therapy could influence the degree of results.

Sounds like a very good idea. A parody skit on youtube of duing (Parker's word) LP.
Step on circle. "I will stop duing silly therapies" Hand clap.

 

[Binkie4]

If anyone reads the Observer, take a look at page 29 of main section.

Article describes how Clare Balding did an interview which the interviewer, Ginny Dougary, thought had gone well. After she had submitted her article, Ginny was surprised to find that " Clare and her agent" had been sent the piece for " copy control" and she was being asked to allow publication under her name of the piece that had had excerpts rewritten. She withdrew her name as author and suggests that articles should have a clear alert as to whether the celebrity had had opportunity to revise what had been written.

Somehow this reminds me of EC. Revision of her thinking to insert the word biological whenever she can, ought to have an alert notice attached. Am sure we could think up something suitable? Maybe " doing a Crawley" to indicate revisionism, or something similar.

 

[Countrygirl]

If anyone reads the Observer, take a look at page 29 of main section.

? Maybe " doing a Crawley" to indicate revisionism, or something similar.

Yep! Good idea!

There is more than one way of skinning a cat! ( Horrible expression!)

If we all start adopting the expression across our membership, how quickly could we get it into a dictionary..............accompanied with the necessary explanation, obviously!

Shall we try a little experiment then ?

 

[Binkie4]

Wow @Countrygirl.

Next time EC or anyone of that group sidles 'biological' into the language, they are "doing a Crawley".

Let's see what happens!

 

[Countrygirl]

Wow @Countrygirl.

Next time EC or anyone of that group sidles 'biological' into the language, they are "doing a Crawley".

Let's see what happens!

Or just plain lying for their own gain.

I think we need to agree on a definition before we launch the idea.

I was thinking more along the lines of promoting rubbish science to feather their own nests.

Perhaps someone else has a better idea?

 

[Binkie4]

Perfect!

 

[Countrygirl]

Just bought the 'I' as it has named 'Chronic Fatigue' as being one of the conditions caused by cabin 'air' that is contaminated by toxins from the engines.

It is found on page 5 in a major article headed 'Frequent Flyer Health warning over Cabin Air'.

It states that airlines (like Wessely) are in denial about the threat. One engineering design professor is quoted as stating that in his world 'everyone has a concern about this issue'

How odd that the medical profession dismisses this illness while aircraft design engineers accept it as a real threat.

A study on 200 cabin crew completed in June by Dr Susan Mitchaelis found a pattern of chronic and acute symptoms from damage to the brain and nervous system, heart arrhythmia, fatigue and chronic gastrointestinal problems.

Perhaps the airlines had better call Parker!

They need to start cutting out paper circles........................

 

[Barry53]

Just bought the 'I' as it has named 'Chronic Fatigue' as being one of the conditions caused by cabin 'air' that is contaminated by toxins from the engines.

It is found on page 5 in a major article headed 'Frequent Flyer Health warning over Cabin Air'.

It states that airlines (like Wessely) are in denial about the threat. One engineering design professor is quoted as stating that in his world 'everyone has a concern about this issue'

How odd that the medical profession dismisses this illness while aircraft design engineers accept it as a real threat.

A study on 200 cabin crew completed in June by Dr Susan Mitchaelis found a pattern of chronic and acute symptoms from damage to the brain and nervous system, heart arrhythmia, fatigue and chronic gastrointestinal problems.

Perhaps the airlines had better call Parker!

They need to start cutting out paper circles........................

I imagine most people are exposed to earthbound traffic fumes in far higher long term accumulations, which makes you wonder if that may prove in due course to be a significant contributory factor in ME.

 

[anni66]

They have to defend Smile because it uses the same methodology that they have used for other trials and has the same fundamental issues. There are of course other issues here around ethics but I think even here an ethical position of running a weak trial (i.e. subjective measures) on children and not warning of potential harms is the same issue as with other Crawley trials.

I think there is the potential for significant harm . Making it " your fault" and keeping things secret is a dangerous combination in adolescents. I don' t know if talk of suicide is real or not, but it could be when the combination of chronic illness, social isolation, teenage hormones and made to feel completely responsible if you "fail" to recover are thrown together. A very dangerous game.

 

[Invisible Woman]

I think there is the potential for significant harm . Making it " your fault" and keeping things secret is a dangerous combination in adolescents. I don' t know if talk of suicide is real or not, but it could be when the combination of chronic illness, social isolation, teenage hormones and made to feel completely responsible if you "fail" to recover are thrown together. A very dangerous game.

....and those ethical concerns alone should have prevented this trial from going ahead.

Bet the parents weren't warned about that as a potential harm.

 

[Woolie]

It seemed very obvious that Charles was blocked from making any comment on LP, or EC's research. It will be interesting to know if that was a pre-agreed condition.

The overall message I took was that ME is a serious condition, there have been no effective treatments, but don't worry guys, LP might offer hope. Public service broadcasting at its best. Who needs an advertising budget when there is the BBC?

The feeling I got, and I might be wholly wrong, was that somewhere high within the organisation there is an obstruction to proper reporting.

I spoke to a BBC reporter a while ago (about something else ME related), and this person said that EC is a very difficult interviewee, she threatens legal action if any programmer attempts to include content that might be critical of her work.

Don't want to give names or dates or contexts, because it was said 'off the record'. But might go some way to explaining what went on there.

 

[Woolie]

I tend to feel physically slightly better when feeling psychologically stressed - more energetic, less severe symptoms etc. Am I the only one?

Me too.

And that makes sense to me. The feeling of being ill with the flu - or similar - is a sign that our immune system is working hard, maybe even overworking. So acute stressors, anything the undermines our immune response, should cause us to feel less ill, not more.

 

[daisybell]

Me too.

And that makes sense to me. The feeling of being ill with the flu - or similar - is a sign that our immune system is working hard, maybe even overworking. So acute stressors, anything the undermines our immune response, should cause us to feel less ill, not more.

Yes - I can usually 'rise to the occasion' at least for a while. But then I pay for it later.....

 

[Chrisb]

I spoke to a BBC reporter a while ago (about something else ME related), and this person said that EC is a very difficult interviewee, she threatens legal action if any programmer attempts to include content that might be critical of her work.

Now that is interesting. It takes a considerable degree of self confidence to threaten legal action. Dealings through complaint procedures, and demands for right of reply are one thing - legal action quite another.

Why would one be confident that the journalist would back down? One would look doubly silly if he/she did not.

EDIT That was a rhetorical question. I fully understand the reluctance to give further information.

 

[Keela Too]

I spoke to a BBC reporter a while ago (about something else ME related), and this person said that EC is a very difficult interviewee, she threatens legal action if any programmer attempts to include content that might be critical of her work.
.

So why does anyone interview her?
An interview given under those conditions delivers only unchallenged bias.

And why, are interviewers cowed by these threats?
Surely the threats themselves should become part of the story!

Time for the media to leave her out in the cold I think.

 

[Ritto]

So why does anyone interview her?
An interview given under those conditions delivers only unchallenged bias.

And why, are interviewers cowed by these threats?
Surely the threats themselves should become part of the story!

Time for the media to leave her out in the cold I think.

Is this even legal?
Surely the BBC would protect their staff?
Anyone told David Tuller @Jonathan Edwards ?
Would the BBC allow this to be a condition, to allow this to not "become part of the story"?
I just can't believe this is happening.
Surely it is against everything that the Beeb stands for?

 

[Mithriel]

I have to go to see my GP. Unfortunately the one I have seen for the past twenty years is sick so I am dreading seeing someone new.

But I am heartened that if she starts spouting BPS dogma I shall point out the SMILE trial and feel superior.

The BPS people have been using threats of legal action successfully for years. An American ME magazine had to black out one of the pages when they sent it to subscribers in the UK in the early 90s I think. Then they have always used the law to punish parents and patients who disagree with them. Not to mention threatening SAGE and David Marks to stop the PACE papers.

They are VERY well connected.

 

[lilpink]

So why does anyone interview her?
An interview given under those conditions delivers only unchallenged bias.

And why, are interviewers cowed by these threats?
Surely the threats themselves should become part of the story!

Time for the media to leave her out in the cold I think.

Completely agree. After all 'science' & 'academia' (and she hilariously claims allegiance to both) are arenas in which having a 'questioning mind' is essential. To prevent others questioning her is bizarre... but really, knowing what we do about her, unsurprising.

 

[lilpink]

I just can't believe this is happening.

It's definitely happening. This is by no means the first story of its kind that I've heard re the BPS school.