Telegraph Tomorrow - Exercise and positivity can overcome ME

[Valentijn]

How about we all throw ourselves into A and E claiming that we have followed PACE's recommendations and bring the NHS to its knees? Now that would get some coverage.

Uh, no.

Screwing with emergency services can have a very harmful impact upon others. And that would be extremely negative coverage, which is especially counter-productive at a time when we're getting a great deal of positive coverage.

 

[digital dog]

No it definitely wouldnt be a good idea. Just making a joke about the ridiculousness of this whole mess.

 

[charles shepherd]

Interesting to see that the Daily Telegraph has not yet published a single letter on their news item re PACE so far - and there must have been a considerable number of well written letters sent in

We will leave it for now - as a formal complaint about the headlines has now gone to IPSO

But I don't think they can get away with no right of reply…….

 

[Bob]

Thanks so much for making those complaints, Charles. Appreciate how much time it must have taken you.

 

[slysaint]

It's a pity the 'celebrity' sufferers don't speak out more.

 

[charles shepherd]

It's a pity the 'celebrity' sufferers don't speak out more.

I'm afraid that some of the 'celebs' here in the UK can go seriously off message when they speak to the press, especially when (as is quite often the case) they have discovered a 'miracle cure'

So this is an area where the MEA treads very carefully - unless we know exactly what the celeb is going to start saying to the press………

On the other hand, there are some well known names in politics, media, industry, the arts etc who have ME/CFS but prefer to keep their heads well below the radar. Some of them would actually do a good job if they were willing to go public

 

[SOC]

It's a pity the 'celebrity' sufferers don't speak out more.

They probably can't afford (or feel they can't afford) to compromise their careers by admitting to a heavily stigmatized illness. I suspect some celebs willing to say they have Lyme or fibro actually have ME, but prefer to have the diagnosis of a somewhat more socially acceptable illness.

I'd guess once the minefield is cleared and there's a public relations advantage to having a once-maligned illness, we'll find plenty of celebs willing to jump on the bandwagon. I see the same thing starting to happen with "celebrity" scientists. They all could have called out the PACE trial years ago, but weren't willing to take the risk. Now that David Tuller took the risk (and survived) and there is a groundswell of support beginning to arise, more of them are willing to pile on. Very few people are willing to risk everything to support a weak and maligned group abused by a very powerful entity. This is particularly true of celebs whose living and sense of self are tightly tied up in their public image.

It looks like it's our job to do all the difficult groundwork to make it safe for big names to support us. That means debunking the BPS nonsense and the threatening ME militants myths. Then we can let the celebs come in and do all the awareness-raising.

 

[worldbackwards]

there are some well known names in politics, media, industry, the arts etc who have ME/CFS but prefer to keep their heads well below the radar. Some of them would actually do a good job if they were willing to go public

You can hardly blame them. I increasingly think that this is the new "closet" - can anyone imagine another group who could have been hammered at so remorselessly by the likes of Rod Liddle, and with so little backlash, just for being what they are?

It used to be that these stigmatised areas were drawn up by religion, but now it seems that, with science so heavily relied upon for "the truth", this kind of thing is prone to happen whenever it takes a significant detour from reality.

In terms of doing a good job, I'm not sure that there's the interest in it for it to make much difference. Stuart Murdoch made a bit of intelligent and useful fuss about his illness recently, during which he said he'd gone to the BBC last year and asked them to use him in some kind of programme about it all. No such programme ever appeared, so I imagine that no-one wanted to know. Which is hardly surprising either.

 

[Ecoclimber]

I'm afraid that some of the 'celebs' here in the UK can go seriously off message when they speak to the press, especially when (as is quite often the case) they have discovered a 'miracle cure'

So this is an area where the MEA treads very carefully - unless we know exactly what the celeb is going to start saying to the press………

On the other hand, there are some well known names in politics, media, industry, the arts etc who have ME/CFS but prefer to keep their heads well below the radar. Some of them would actually do a good job if they were willing to go public

@SOC
Yes, but you do have Lady Mar of the House of Lords who as courageously led the way. By her singularly courageous efforts on behalf of the ME/CFS patient community, took the fight on not only against the scientific flaws of the PACE trial but the well entrenched and very prominent and illustrious psychiatric/psychological medical establishment at world renown institutions.

Believing that many others would be so inspired by this fact alone, I am surprise given the indomintable British spirit, that many other prominent sufferers were not courageous enough to come forward. In my own mind, I would label her as the sort of Joan of Arc for this patient community. Not having much background on this issue in the UK, I was impressed by her heroic efforts especially in Lady Mar's dialogue between Sharpe et al.

 

[SB_1108]

It's a pity the 'celebrity' sufferers don't speak out more.

I can't say I blame them. Especially after reading comments on this article about Yolanda Foster:
http://radaronline.com/celebrity-ne...-housewives-beverly-hills-allegations-faking/
From article comments:

Yolanda was sure looking happy, energetic and well in Holland, wasn't she? Biking for miles and miles in the countryside past windmills and tulip fields, but in the US she can barely move out of her chair. Besides, Yolanda posts constant barrage of photos for the specific reason to gain sympathy. It's not about promoting awareness of Lyme's disease. It's all about 'look at ME!' 'Feel sorry for ME!' 'Pay attention to ME!'

I personally enjoy her pictures and comments because I feel like its raising awareness, I don't think she is looking for sympathy.

 

[charles shepherd]

@SOC
Yes, but you do have Lady Mar of the House of Lords who as courageously led the way. By her singularly courageous efforts on behalf of the ME/CFS patient community, took the fight on not only against the scientific flaws of the PACE trial but the well entrenched and very prominent and illustrious psychiatric/psychological medical establishment at world renown institutions.

Believing that many others would be so inspired by this fact alone, I am surprise given the indomintable British spirit, that many other prominent sufferers were not courageous enough to come forward. In my own mind, I would label her as the sort of Joan of Arc for this patient community. Not having much background on this issue in the UK, I was impressed by her heroic efforts especially in Lady Mar's dialogue between Sharpe et al.

Yes, the Countess of Mar is a shining example of someone in a very prominent position in public life who is happy, where appropriate, to bring in her personal experience of illness following exposure to organophophate pesticides on her farm

I meet with her quite regularly at the House of Lords and she strikes exactly the right balance when it comes to bringing in personal experience to the debate when and where appropriate

Sadly, this is the exception to the rule - in my humble opinion......

Countess of Mar and 'sheep dip' poisoning:

http://www.pan-uk.org/pestnews/Issue/Pn35/pn35p4.htm

 

[SOC]

@SOC
Yes, but you do have Lady Mar of the House of Lords who as courageously led the way. By her singularly courageous efforts on behalf of the ME/CFS patient community, took the fight on not only against the scientific flaws of the PACE trial but the well entrenched and very prominent and illustrious psychiatric/psychological medical establishment at world renown institutions.

Believing that many others would be so inspired by this fact alone, I am surprise given the indomintable British spirit, that many other prominent sufferers were not courageous enough to come forward. In my own mind, I would label her as the sort of Joan of Arc for this patient community. Not having much background on this issue in the UK, I was impressed by her heroic efforts especially in Lady Mar's dialogue between Sharpe et al.

Indeed. We need more like Lady Mar. She has been Annie Gsampel for quite some time.

Lady Mar

 

[slysaint]

What happened after the 2011 parliamentary debate(I think it was Burstow who was minister for health) about ME and CFS definitions/treatment?

 

[charles shepherd]

What happened after the 2011 parliamentary debate(I think it was Burstow who was minister for health) about ME and CFS definitions/treatment?

Not a lot because the UK government/Dept of Health and DWP leave recommendations and decisions about clinical assessment, diagnosis and management to NICE

And as you all be aware, NICE have concluded that there is no new research evidence which would support a revision of the 2007 NICE guideline on ME/CFS - which is why it now sits in their wretched static list

As you are also probably aware, we are trying hard - through meetings with both NICE and NHS England - to get NICE to change their mind on this. So far without any real success - although some progress is being made

I'm afraid the DoH does not normally interfere with NICE, or instruct NICE to change its mind, in this sort of situation and BACME do not feel there is any need to revise the NICE guideline on ME/CFS

 

[Scarecrow]

And as you all be aware, NICE have concluded that there is no new research evidence which would support a revision of the 2007 NICE guideline on ME/CFS - which is why it now sits in their wretched static list

In your opinion, what was the quality of evidence for CBT and GET before 2007? Size of studies, robustness of method?

 

[charles shepherd]

In your opinion, what was the quality of evidence for CBT and GET before 2007? Size of studies, robustness of method?

There were a number of clinical trials carried out on CBT and GET prior to 2007

Almost all were carried out by researchers who used and were enthusiastic about these two forms of treatment

Although some of these trial results were very bordline in regard to efficacy, there were sufficient in number to allow NICE to conclude that these were the only two evidence based treatments that had demonstrated effectiveness (and safety) in treating ME/CFS

So we ended up with the 'one size fits all' treatment recommendation in the 2007 NICE guideline

If you want to follow up this evidence in more detail have a look at the York Review, which was the academic search document (i.e. systematic review)that formed the basis for these NICE 2007 recommendations

York Review (2006):

https://www.york.ac.uk/media/crd/crdreport35_summ.pdf



The tables on effective/non effective interventions on pages 3 and 4 make interesting bedtime reading....

 

[Scarecrow]

If you want to follow up this evidence in more detail have a look at the York Review, which was the academic search document (i.e. systematic review)that formed the basis for these NICE 2007 recommendations

York Review (2006):

https://www.york.ac.uk/media/crd/crdreport35_summ.pdf



The tables on effective/non effective interventions on pages 3 and 4 make interesting bedtime reading....

Thank you. I'll certainly take a look.

Given that PACE was post 2007, I was wondering if there would be any implications for the NICE guidelines if the recovery claims and normal range calculations are retracted as the #MEAction petition calls for.

Would that strengthen your case with NICE?

 

[Esther12]

I'm afraid the DoH does not normally interfere with NICE, or instruct NICE to change its mind, in this sort of situation and BACME do not feel there is any need to revise the NICE guideline on ME/CFS

I don't really understand much about how BACME was set up/why it has any authority/respect/etc. Could you fill us in at all?

They seem rubbish - does that matter?

 

[A.B.]

Given that PACE was post 2007, I was wondering if there would be any implications for the NICE guidelines if the recovery claims and normal range calculations are retracted as the #MEAction petition calls for.

There are other studies that claim to show the effectiveness of CBT for CFS. A pre PACE meta analysis reported that up to about 70% of patients had normal fatigue levels after CBT.

There's a mountain of shit that needs to be cleaned up. These studies cannot be right - either they're conflating other things with CFS or their methodology is horribly biased, or maybe both.

What will happen if PACE is retracted and more people become aware of how poor the science is in this area?

Can the death of the PACE trial spark a small revolution where research is finally held to a certain standard?

 

[Scarecrow]

There are other studies that claim to show the effectiveness of CBT for CFS. A pre PACE meta analysis reported that up to about 70% of patients had normal fatigue levels after CBT.

Yes, I'm looking forward - but not with much pleasure - to reading the York review link that @charles shepherd posted earlier.

What will happen if PACE is retracted and more people become aware of how poor the science is in this area?

That's what I'm getting at.