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

[dyfalbarhau]

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.

Whether or not they accept the biological origin/maintenance of ME/CFS they will ALWAYS consider CBT a valid tool for the treatment and/or management of it. Maybe they will adopt the "helping to cope with" model of CBT instead of the "correction of false illness beliefs" model when that happens though. We can hope!

 

[ukxmrv]

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.


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?

Molly,

The psych lobby put forward as a "perpetuating" factor of CFS membership of a support group. The same objections would be raised for a mentoring service that was out of their control and beliefs.

The "public" don't care about this. We don't control the media or the message. Your service would be no different in their eyes if you did not toe the line on the official version of what the disease is.

You might be able to get an article in a newspaper or similar to try and argue the case but the opposition (and that includes Crawley) would be publishing papers and mounting major media campaigns and your message would be largely lost. If you made too much noise you would become part of the "abuse" they claim to receive.

Think of all the good work the TYMES trust does.

It's very easy for the Psych to sustain what they do. Your arguments against this don't currently work.

That doesn't mean you couldn't do it or offer it of course.

 

[Large Donner]

Molly,

The psych lobby put forward as a "perpetuating" factor of CFS membership of a support group.

Interesting isn't it, yet Esther Crawley is the medical adviser for AFME, a membership group.

 

[Daisymay]

Interesting isn't it, yet Esther Crawley is the medical adviser for AFME, a membership group.

Ha, ha! Good point.

 

[slysaint]

Interesting isn't it, yet Esther Crawley is the medical adviser for AFME, a membership group.

she's the medical adviser for AYME and membership (as I understand it) is free ( apart from the over 26 club)

Edit: but I understand where you're coming from

 

[Esther12]

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.

It's not like concerns about PACE can be put into a nice simple explanation for a general audience! And in the UK patients have faced a fairly prolonged smear campaign that undermines us in the eyes of many.

We wouldn't be able to get away with the sorts of PR tactics used by Crawley & co.

 

[Large Donner]

she's the medical adviser for AYME and membership (as I understand it) is free ( apart from the over 26 club)

Edit: but I understand where you're coming from

Yes my mistake its AYME.

 

[Barry53]

We wouldn't be able to get away with the sorts of PR tactics used by Crawley & co

That was the absolute last thing I was (or would dream of) suggesting. EC's tactics disgust me. My comment 3 clarified:-

3. Above all it has to be open and honest. EC demonstrates how easy it is the spot when it is not

 

[Esther12]

That was the absolute last thing I was (or would dream of) suggesting. EC's tactics disgust me. My comment 3 clarified:-

Yeah I got that, sorry, that was me not being clear.

IMO: Crawley is able to get away with her simplified messaging partly because she's presented as an authority figure. Even if we were trying to do a more honest version of that, I don't think we'd be able to get away with it in the UK.

 

[Barry53]

IMO: Crawley is able to get away with her simplified messaging partly because she's presented as an authority figure. Even if we were trying to do a more honest version of that, I don't think we'd be able to get away with it in the UK.

She is quite a piece of work isn't she. But I think the truth will out. Kaye Adams' radio show was good today.

 

[Solstice]

Yeah I got that, sorry, that was me not being clear.

IMO: Crawley is able to get away with her simplified messaging partly because she's presented as an authority figure. Even if we were trying to do a more honest version of that, I don't think we'd be able to get away with it in the UK.

Disagree with that. I think it's pertinent we get our own narrative out besides her. It should atleast sow some seeds of confusion, which maybe makes medical experts look at the studies a bit closer themselves. Will you win the information-war with it? Most likely not, but you might just turn over some doctors. And that should be the goal, not to get everyone on our side at once, but start one-by-one if necessary.

From personal experience, I've done CBT and GET at my own request in 2005 when I was unknowing. My GP had high hopes it would do something for me, so he supported me. Years later we both came to the conclusion it hadn't worked. I've started with DML in 2011, having seen CBT and GET did nothing for me and I only got worse over time, my GP supported me again. In my battle against the UWV(benefits institution in NL) he supported me. A psychologist working for the UWV told me to go to Nijmegen(Radboud) to get CBT and GET. And now my GP opposes that stance having learned more and more about the disease. This not only helps me, but it helps other patients in his care too.

That's what it's all about imo. Educating as much as we can. Some GP's might pick up on it. A lot won't. But untill we have a cure I think turning around as much GP's and medical carers as we can should be the objective.

Then maybe the next time a FOI request is made it won't be 40 professionals signing their name under it, but it will be 140. Or even more. Small goals and work on from there.

 

[Sean]

Prof. Crawley: Time to end the damaging battle over CFS.

I couldn't agree more.

I simply quote from this blog about PACE and its problems, by a former editor at the Lancet (also a trained medical statistician):

Psychiatrists need to understand that their presence anywhere near this condition is now toxic, and maybe they need to take a step back.

https://lucibee.wordpress.com/2016/01/27/my-thoughts-about-the-pace-trial/

Over to you, Prof. For the good of the kiddies, I'm sure you will agree.

 

[worldbackwards]

Prof. Crawley: Time to end the damaging battle over CFS.

The end of said damaging battle that Crawley et all have always looked for is basically crushing patients' spirit.

As such, it will not end until we have won, as we have nothing to lose.​

 

[Esther12]

Disagree with that. I think it's pertinent we get our own narrative out besides her.

...

From personal experience, I've done CBT and GET at my own request in 2005 when I was unknowing. My GP had high hopes it would do something for me, so he supported me. Years later we both came to the conclusion it hadn't worked. I've started with DML in 2011, having seen CBT and GET did nothing for me and I only got worse over time, my GP supported me again. In my battle against the UWV(benefits institution in NL) he supported me. A psychologist working for the UWV told me to go to Nijmegen(Radboud) to get CBT and GET. And now my GP opposes that stance having learned more and more about the disease. This not only helps me, but it helps other patients in his care too.

That's what it's all about imo. Educating as much as we can. Some GP's might pick up on it. A lot won't. But untill we have a cure I think turning around as much GP's and medical carers as we can should be the objective.

I agree with what you've said. There is a danger that patient's personal anecdotes can end up sounding a bit loopy, as they might include all manner of misinterpreted co-incidence or misinformation, but having informed patients calmly tell of their experiences is a really good thing imo.

That's different to what Crawley presents herself as doing, which is not just laying out her anecdote, but stating 'facts' about treatment efficacy, trial design, etc. I thikn that it's much harder to patients to do that in a simplified manner, as we're often opposing authority figures so have more need to go in to the details of our reasoning.

 

[Countrygirl]

I agree with what you've said. There is a danger that patient's personal anecdotes can end up sounding a bit loopy, as they might include all manner of misinterpreted co-incidence or misinformation, but having informed patients calmly tell of their experiences is a really good thing imo.

This makes me think of a call I had today from a patient who although ill for over 20 years following a blood transfusion does not use a computer and as a result knew virtually nothing about her illness or the politics surrounding it.She has relied on her CFS clinic to guide her through treatment and regarded them as the 'experts' in ME.

The reason she phoned me was to ask if I could tell her how she could get back to being treated by the fatigue clinic (I won't name the area.) as they have discharged her after relapsing as a result of their treatment. She couldn't understand how this could happen if it is the recognised management approach for ME.

I ask her why she was so keen to return, especially as she had been ill for so long and nothing new was on offer.

She told me that they had treated her with CBT and GET. and, as a result, she became much more ill, but instead of supporting her once she relapsed she was discharged and she is desperate to get back on their books so they can help her now her health has deteriorated. Apparently, they have refused to give her another appointment. It seems as if her deterioration as a result of their treatment is to be ignored by the clinic.

Was her relapse following GET reported? I guess not. They have made her much more disabled and refuse to see her again.

At least she is now much more knowledgeable about her illness and was almost in tears of relief to be able to talk about how ill she is following her experience at the clinic.

 

[daisybell]

@Countrygirl i can't like your post above... poor lady. Do you think she'd be willing to share her story for the collection supporting #stopGET?

 

[A.B.]

This makes me think of a call I had today from a patient who although ill for over 20 years following a blood transfusion does not use a computer and as a result knew virtually nothing about her illness or the politics surrounding it.She has relied on her CFS clinic to guide her through treatment and regarded them as the 'experts' in ME.

Isolated patients are so vulnerable. It's sad.

 

[Countrygirl]

@Countrygirl i can't like your post above... poor lady. Do you think she'd be willing to share her story for the collection supporting #stopGET?

I wondered this too.

I don't have her number as I am just a contact for people who want advice on ME. I told her to ring me again anytime if she wants to talk so I could ask her then if she does. In the meantime I have given her lots of 'homework' so she becomes much more knowledgeable and more able to protect herself from damaging treatments.

She insisted on sending me a thank you card which is so kind, so if she puts her contact details there, I could follow that up.

 

[Countrygirl]

I have hesitated to say this, but it is a problem that has arisen over the very recent years and is (indirectly?) relevant to this thread as it relates to the sloppy diagnosis of ME by the clinics and people like Esther Crawley. However, I must emphasise that it is just my observation.

For 30 years I have been involved in providing support in one way or another in ME; co-ordinating groups; organising accredited lectures for doctors and other professionals; or as now just phone and email support.

In recent years I have noted a change in the type of patient from the clinics who contact me.

For example I have one person now who is very ill; who has been sectioned because she failed to respond to the CBT/GET but is now home and being threatened again because she is in bed and failing to function normally. She is being threatened with further measures being taken and she is terrified and I really fear for her. I also fear what she may do to avoid what action these people may do.

BUT some of the people who contact me having been diagnosed with ME ........or rather CFS which they insist is the same as ME.............do not have any form of ME that I recognise. ( Well, they just don't have it.) Yet they are accepted and diagnosed by the clinics as having CFS and therefore ME.

The people who ring me who have ME are very considerate and anxious not to overload me, but the other folk are quite different. They ring me at terribly late hours and ignore my request that they do not do this. ..........and do it repeatedly . They are very demanding and do not understand what it is like to have ME. They clearly, to me, have been misdiagnosed with ME, and to be honest, they are now in the majority. ( One rang me on Sunday and demanded I came to her house and clean it for her! ) They are distressed and in need of help, of that there is no doubt........but they don't, in my opinion, have ME. This is clearly due to the failure of doctors to understand how to diagnose ME. Are these the folk who will be the participants in FITNET and MEGA?

 

[worldbackwards]

I have hesitated to say this, but it is a problem that has arisen over the very recent years and is (indirectly?) relevant to this thread as it relates to the sloppy diagnosis of ME by the clinics and people like Esther Crawley. However, I must emphasise that it is just my observation.

For 30 years I have been involved in providing support in one way or another in ME; co-ordinating groups; organising accredited lectures for doctors and other professionals; or as now just phone and email support.

In recent years I have noted a change in the type of patient from the clinics who contact me.

For example I have one person now who is very ill; who has been sectioned because she failed to respond to the CBT/GET but is now home and being threatened again because she is in bed and failing to function normally. She is being threatened with further measures being taken and she is terrified and I really fear for her. I also fear what she may do to avoid what action these people may do.

BUT some of the people who contact me having been diagnosed with ME ........or rather CFS which they insist is the same as ME.............do not have any form of ME that I recognise. ( Well, they just don't have it.) Yet they are accepted and diagnosed by the clinics as having CFS and therefore ME.

The people who ring me who have ME are very considerate and anxious not to overload me, but the other folk are quite different. They ring me at terribly late hours and ignore my request that they do not do this. ..........and do it repeatedly . They are very demanding and do not understand what it is like to have ME. They clearly, to me, have been misdiagnosed with ME, and to be honest, they are now in the majority. ( One rang me on Sunday and demanded I came to her house and clean it for her! ) They are distressed and in need of help, of that there is no doubt........but they don't, in my opinion, have ME. This is clearly due to the failure of doctors to understand how to diagnose ME. Are these the folk who will be the participants in FITNET and MEGA?

Over the last decade we've had a mixture of guidelines that steer doctors in this direction, poor criteria which take in far too many and the increasing power of the clinics.

I know a herbalist who says she doesn't get much ME traffic these days as they all go off for "scientific" treatment on the NHS, whereas before they'd have been thrown to fend for themselves. Now of course they've got people to "help" them. Lucky, lucky, lucky...