E. Crawley: Time to end the damaging battle over chronic fatigue syndrome

[Molly98]

I think also the mentors might risk laying themselves wide open to accusations of practising health improvement strategies on children, without medical knowledge/qualifications (and yes, I fully appreciate the tragic irony of this!).

I can see your concern, however, I think it is quite possible to set something up and avoid such accusation. We would not be offering cures, or treatments, just support. This is nothing different than what is already done through many charities with children and young people with a range of difficulties: social, emotional and physical and educational of course.

Yes it would absolutely have to be professional and yes it would absolutely need the correct police checks and other checks in place to ensure safeguarding and child protection, yes there would have to be policies and procedures in place and training for volunteers, in the same way there would for any person or organisation working directly with children. But other charities manage it, why should it be that ME is the exception?

Yes it would take work and effort to get it right but It is not impossible and we have people with considerable skills and experience in our community.

It is not impossible to imagine having too branches, one that supports parents, for those who feel more comfortable offering support to other adults and the other branch offering one to one support to the child/ young person, for those who are perhaps more comfortable or familiar with working with children and young people. It is both that need support.

 

[ash0787]

Listened to the conversation with Dr Hammond, hahahaha.... shes good, very good. Probably better than any of the US presidential candidates.

So the way to beat her in this case is ... when she keeps going on about ' weve been trying to do this large scale biological study for years ' and ' if I had a million pounds ' you ask ' how much will this online program cost ' and push for more details on this alleged biological study, find out why she hasn't been successful in organizing it, then draw attention to the large amount of successfully completed studies in other countries, and mention that the NICE is inclined to disregard these.

Then suggest that why not use the money to fund the biological study instead of this 'online therapy' and simply update the guidelines of GPs and the NHS website to encompass the lifestyle management advice of patient associations.

You cant really go into this sort of debate with a fixed script of points of contention, she will adapt to it, you have to look at her debating style and try and find the weaknesses dynamically.

 

[eafw]

I suspect it would be more useful for parents than for children. Also with kids there would be child protection issues with any mentoring scheme and ensuring the mentors have appropriate checks in place.

I would take it as read that anything involving minors would go through the parents, and charities would be involved to advise on anything necessary here."Young people" also include the 18-25s (can't find it on tymes site but ayme specify this) and they are adults in their own right.

Especially as she has said on the BBC that Prof Davis and other are wasting their time and are not adding anything to the the world's literature
I missed that. Do we have it on record anywhere?

She said "we have to stop doing these really small studies, because I think they're confusing", and I think in context it was as much to do with setting up the importance of MEGA as the one big study needing to be done, results from which can be used to blot out everything else. Whatever the interpretation, we can speculate, but we shouldn't be propagating blatant misquotes - we don't need to, plenty of material from what she actually said.

"[19.58 EC] So, I think when we look at this, we’re limited by imagination, and (ah) the studies to
date are too small, and are what we call ‘cross-sectional’ studies. So, if I was given a million pounds,
I would do what we’ve planned to do, which is to collect biological samples from thousands and
thousands of patients, to subdivide the illness into [20.19] different things. So what I think is
probably a group of patients with chronic fatigue syndrome have a raised inflammatory response to
infection; I think there’s a group of patients who very rapidly disorder their cortisol levels; I think
there’s going to be a group of patients who may have problems with serotonin. But the truth of the
matter is we don’t know who those patients are going to be, and we [20.38] need really large, large
sample sizes with multiple time points, to work out this very very complicated illness.
And we have to stop doing these really small studies, because I think they’re just confusing. They
don’t end up being what’s called ‘replicated’, so they’re not reproduced a second time, and I don’t
think they’re adding, at the moment, to the world literature.
[20.58 PH] So you’re committed to keep trying to do a large scale biological trial ...
[21.02 EC] Absolutely, we’ve been trying to do that ...
[21.03 PH] As well as the other things you’re doing about CBT, that’s what you want to do ...
[21.05 EC] Yeh, yeh, we need to do both."

 

[loops]

We do have Tilt Tables Esther. And doctors to use them. How many of these youngsters have POTS and could be treated.?

 

[alex3619]

Absolutely right. I did a spot of door-to-door selling at a tricky point in my life a long time ago (did not work out - I was too honest ),

Doh, ditto.

 

[dyfalbarhau]

"[19.58 EC] So, I think when we look at this, we’re limited by imagination, and (ah) the studies to
date are too small, and are what we call ‘cross-sectional’ studies. So, if I was given a million pounds,
I would do what we’ve planned to do, which is to collect biological samples from thousands and
thousands of patients, to subdivide the illness into [20.19] different things. So what I think is
probably a group of patients with chronic fatigue syndrome have a raised inflammatory response to
infection; I think there’s a group of patients who very rapidly disorder their cortisol levels; I think
there’s going to be a group of patients who may have problems with serotonin. But the truth of the
matter is we don’t know who those patients are going to be, and we [20.38] need really large, large
sample sizes with multiple time points, to work out this very very complicated illness.
And we have to stop doing these really small studies, because I think they’re just confusing. They
don’t end up being what’s called ‘replicated’, so they’re not reproduced a second time, and I don’t
think they’re adding, at the moment, to the world literature.
[20.58 PH] So you’re committed to keep trying to do a large scale biological trial ...
[21.02 EC] Absolutely, we’ve been trying to do that ...
[21.03 PH] As well as the other things you’re doing about CBT, that’s what you want to do ...
[21.05 EC] Yeh, yeh, we need to do both."

We can't replicate something if it hasn't been done once yet, can we? And why is it useful that we keep doing small scale BPS studies that haven't added anything new to the literature since the first one, but new small scale studies into the biology of ME/CFS shouldn't even be considered?

It seems to me that what Esther Crawley is looking for is to find some kind of biomarkers for depression, anxiety and related issues. At the very least she's looking for a group of patients who exhibit no biological abnormalities so she can just go back to treating them with the modified CBT used in ME/CFS (and to be fair, it may even be successful because a group for whom it would be helpful will have finally been found).

 

[Cinders66]

As far as I'm aware the big themes in ME biomedical research is the autoimmunity one with possibly rituximab treatment - a major £3m trial completing next year and the recent metabolism findings - small studies but found by 3 HQ independent groups with at least 2-3 other studies (Ron Davis' severe , Naviaux follow up & Lipkin?) underway. These are major breakthroughs yet she is focusing on cortisol (a wesselyite preoccupation) and possibly serotonin and doesn't mention these? Looks to me like following the Wessely /Chalders blinkered British approach but if your interest is in behavioural interventions then CBT and genetics probably would interest you more.


I think her archiles heal will be the continued promotion of the PACE trial as a good trial and high success in adults.

We really need to pull up these researchers on recovery terminology too. Whilst in ME it's difficult to use the word even if entirely free of symptoms no matter what you do, as a healthy would be because of the risk of relapse, recovered HAS to mean more than feeling much better. PACE took this far but In the Dutch trial, kids were classed as recovered if saying they were recovered or nearly recovered - ridiculous, especially when that recovery stat gets on BBC headlines. To me recovery = ME symptom Free and with healthy energy. If you still have to pace, still sleep bad /unrefreshing or get pain or headaches on exertion then you aren't recovered.

One classic teen case I know of was a girl who got pretty ill at 16 but was allowed to convalesce for a year abroad doing little and got better (no need for CBT) . She did university, worked and has a family so can live a reasonably normal life but still gets tired easily and couln't push herself to extremes e.g. A polar expedition like a healthy could without concern. So she's not recovered but nearly recovered. I think CEO Carol Head classes herself in that category.
Another 16 year old I heard of, again lucky in that she saw a knowledgeable GP in first few months, was told to pace and again almost recovered , a normalish seeming life but still has the odd "PJ day" as part of her now normal and needs bit extra help often with child care because if it, not recovered then in the way Yvette Cooper Labour MP is entirely free of symptoms and energetic.

In fitnet I think I saw 8% of those "recovered" at 6 months were no longer "recovered" at 12.

 

[Sidereal]

These are major breakthroughs yet she is focusing on cortisol (a wesselyite preoccupation) and possibly serotonin

Yes, cortisol and serotonin, all the rage... in late 1980s/early 1990s. These UK researchers are stuck in a time warp.

One classic teen case I know of was a girl who got pretty ill at 16 but was allowed to convalesce for a year abroad doubt little and got better (no need for CBT) . She did university, worked and has a family so can live a reasonably normal life but still gets tired easily and couln't push herself to extremes e.g. A polar expedition like a healthy could without concern. So she's not recovered but nearly recovered. I think CEO Carol Head classes herself in that category.

I had a pretty similar experience. Was moderately ill as a teenager. Not bedridden or anything but certainly couldn't attend regular school for a few years. I received no diagnosis at the time and no treatment except a beta blocker (which I stopped taking after a couple of months against doctor's wishes because it was clear that it was making me worse). I just rested as much as I could for a few years. By the time university came around I thought I had recovered but in hindsight I was still more fatigued than regular people and I always considered myself 'unfit'. Except that all my attempts to gain fitness like going to the gym regularly resulted in really marginal fitness gains. What I didn't know at the time was that I wasn't recovered at all but that the disease was just waiting in the wings to pounce on me again in adulthood. When it came back it was 100x worse.

I don't put any stock in Crawley's teenage 'recoveries'. I think, sadly, many of these people are in for a rude awakening later in life and it is only then that they will realise that the CBT or quinoa or whatever it was that they thought they did to make themselves better in adolescence had nothing to do with it and it was just spontaneous remission. Remission, not necessarily recovery.

 

[Daisymay]

Thanks @Daisymay for your input on this, the points you make are very valuable and we definitely need to be aware of this possibility if setting something like this up.

However, I think this would be quite difficult for them to sustain for the following reasons.

1. EC has been quite clear and publically outspoken in her belief now that ME is a Biological not psychological illness. that needs biological medical research. She herself has said it should not be treated as a psychological illness.

2. I think the public would find it highly questionable and suspicious if such support was refused to children and young people. Is there any other illness/ disease or experience that young people have which such support would not be welcomed?

3. We would not be talking about treatment or cures simply 1 to 1 support by adults who live with this disease on a daily basis and therefore have the lived experience of the problems and difficulties these young people face.

4. We would be offering emotional, moral and practical support, I think it would be difficult to oppose that for any child struggling with any difficulty.

5. If this issue came up, If that were their opinion, then the results and feedback of the support would speak for themselves and they would have to prove their claims of harm, which I think would be very difficult. If it's done professionally through the charities of MEA and Tymes trust I think it could be very awkward for them to have this position, to oppose support to children and young people. I think it would look very abusive to be honest, I mean this is what Child abusers do, they cut off the child and isolate them from other forms of support and other people's opinion so that the child only has access to the adult abusing them. They don't allow the child to hear any opinion other than their own. It is very cult like and highly abusive and I am not sure.

6. EC has talked in the media about coming together, about their not being enough help and support for Young People and their families, well this is the patients playing their role in coming together to support these children and young people.

7. All we hear about is the vocal minority who are trying to deny treatment and support to children and young people, well here is an idea that actually would be us being proactive and positive in supporting children and young people so it would not really fit with the image that is being portrayed of us,

Thanks for your reply Molly98.

I hope you're right and I appreciate where you are coming from, with the very best of intentions to help children, but maybe it is too many years of all of this has made me over cynical but I still think they could use it against people.

They could well argue that in general such an approach is admirable but in the context of this particular illness it wasn't support it was actively colluding to encourage patients and parents wrong beliefs.

As for Crawley now saying ME is biological, it's just words, she now has to keep in with her MEGA biomedical friends. If she really genuinely thought it was biological why isn't she denouncing the use of CBT to correct people's wrong illness beliefs and GET? And her recent use of the lightning process? And the whole BPS model? And speak ut about PACE?

Instead she extols the virtues of PACE and goes ahead with FITNET.

She talks of sorting out people's sleep with CBT and therefore helping them in this respect biologically. If someone is cured of their ill health with this, they don't have ME. I don't really think she thinks ME is organic in the sense that Ron Davis etc think it is organic. She gives a token gesture towards something organic, but as far as I can see that's about it, whilst ensuring her BPS research carries on.

 

[Barry53]

Whatever the interpretation, we can speculate, but we shouldn't be propagating blatant misquotes - we don't need to, plenty of material from what she actually said.

I wholeheartedly agree with you. They clearly need to do that to further their aims, but we most certainly do not need to, and must not. Exposing their untruths is a key strategy for us, so the absolute last thing we must do is to hand them similar gifts on a plate.

 

[Barry53]

Probably better than any of the US presidential candidates.

If Mickey Mouse had put himself forward, the others would not have had a chance. I think maybe he should also become and ME researcher.

 

[Snowdrop]

We can't replicate something if it hasn't been done once yet, can we? And why is it useful that we keep doing small scale BPS studies that haven't added anything new to the literature since the first one, but new small scale studies into the biology of ME/CFS shouldn't even be considered?

It seems to me that what Esther Crawley is looking for is to find some kind of biomarkers for depression, anxiety and related issues. At the very least she's looking for a group of patients who exhibit no biological abnormalities so she can just go back to treating them with the modified CBT used in ME/CFS (and to be fair, it may even be successful because a group for whom it would be helpful will have finally been found).

This also occurred to me while reading post #183 (esther crawley being quoted). The BPS know what's coming in terms of ME getting sorted with a biomarker that shows clear disease process--so by having a huge inclusive study they can find some MUS among the total group who will then (sadly) still be on shaky ground in terms of biology (no markers for ME). They may still even try to stretch to reach for ME people needing CBT if not GET.

As for Crawley now saying ME is biological, it's just words, she now has to keep in with her MEGA biomedical friends. If she really genuinely thought it was biological why isn't she denouncing the use of CBT to correct people's wrong illness beliefs and GET? And her recent use of the lightning process?

The ME is biological needs to be broken down. When said like that it doesn't account for the fact that while biological in origin it is perpetuated by wrong thoughts. This gets left unsaid.

So, biological and not biological.

 

[alex3619]

So, biological and not biological.

Biological and not biological. Hmmm. ME and not ME. CFS and not CFS. CBT and not CBT. Normal and not normal. Recovered and not recovered. Seriously disabled and not seriously disabled. Am I sensing a theme here?

 

[Seven7]

In the USA issue, Rob said I will ask for a senate investigation. In this case that is what we need too. At this point this is mal practice and has to be treated that way.

 

[Barry53]

Biological and not biological. Hmmm. ME and not ME. CFS and not CFS. CBT and not CBT. Normal and not normal. Recovered and not recovered. Seriously disabled and not seriously disabled. Am I sensing a theme here?

Not quite. BS and ... more BS ... that never seems to change

 

[Woolie]

Could they even use it against the parents, that by allowing their child to be mentored by an adult with the disease, these parents are compounding their child's and their own wrong illness belief that they are physically ill, therefore harming their child ?

I don't know if they can say this any more. They're now paying lip service to the "physical illness" concept.

 

[user9876]

I don;t know if they ca say this any more. They're now paying lip service to the "physical illness" concept.

But when they do child protection it is all private and they will say what ever they want. If it goes to the family court they put gagging orders on parents - especially if things go wrong.

 

[Solstice]

Biological and not biological. Hmmm. ME and not ME. CFS and not CFS. CBT and not CBT. Normal and not normal. Recovered and not recovered. Seriously disabled and not seriously disabled. Am I sensing a theme here?

Sounds like a wedding speech. You make me feel both secure and insecure.

 

[Solstice]

Been thinking about the counter-narrative btw. I assume everyone that's heard the great news about fitnet, mega, magenta or any of their other bullshit will be googling those terms.

If we have someone savvy with making movies we'd be able to get out the truth by making movies called, the truth about (pace, fitnet, mega, magenta what have you). It should be movies with easy to understand graphs and points. I.e. the null results at long term follow up, the being sicklier than very elderly persons once you get out the trial, not using objective measures and stuff like that. Just deliver 3/4 points that deliver the most impact and make sure it's easy to follow for even the biggest idiot. So if I can understand it you're golden basically.

Throw in the results from the Dutch, English and Norwegian surveys at the end. With the percentages of people that got worse from their bullcrap.

Overload the comment section(youtube) with personal stories about how CBT and GET has influenced your life. F.e. I've had GET myself and I could talk about how it made me go from being able to do some sports and work to practically being able to do none. Stories like that.

Then as a community click on it as often as you can to get it on top in google. Atleast, that's how it works right?

Have links to the virology blog and further reanalyses of the trials in the info section. Have links to omf, microbe discovery, invest in me etc. in the info section with a plead to donate.

 

[Barry53]

If we have someone savvy with making movies we'd be able to get out the truth by making movies called, the truth about (pace, fitnet, mega, magenta what have you). It should be movies with easy to understand graphs and points. I.e. the null results at long term follow up, the being sicklier than very elderly persons once you get out the trial, not using objective measures and stuff like that. Just deliver 3/4 points that deliver the most impact and make sure it's easy to follow for even the biggest idiot. So if I can understand it you're golden basically.

I do believe that this is sometimes where PR misses tricks that EC does not. When trying to win hearts and minds amongst the general populace, those arguments have to be presented in language the general populace can grasp. One of the key requirements of any article, speech, paper, whatever, is to:-

1. Understand who your target audience. Who it is you want to hear your message, and to gain insight from it.
2. Present your case in a form that achieves '1'.
3. Above all it has to be open and honest. EC demonstrates how easy it is the spot when it is not.