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

[Molly98]

I believe that is radio Bristol which is to be found here:

http://www.bbc.co.uk/radiobristol

Does anyone know if this a usually a phone in show where listeners can comment?

 

[Countrygirl]

Does anyone know if this a usually a phone in show where listeners can comment?

http://www.bbc.co.uk/programmes/p001d79q

It claims to be the only place where you can speak to a GP on a Saturday. Not sure if that refers to Esther though. Maybe you could even ask her help for your ME? Now wouldn't that be nice?

 

[Yogi]

Surely they are in breach of the GMC guidelines which state that the duties of a doctor include:

Keep your professional knowledge and skills up to date.
The BPS doctors don't attend the major conferences (IIME or Florida) for the disease they claim expertise in and seemingly they have not conducted full literature reviews as they keep claiming not much is known (EC says "We know almost nothing about chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME)." Perhaps if she attended some conferences - she'd know a bit more!)


Recognise and work within the limits of your competence.
They are not able to recognise their own limits otherwise they would not keep claiming to be experts based on their limited psychological construction of the disease which ignores the biomedical evidence.


Be honest and open and act with integrity.
These doctors have spun and twisted their results to mislead the public and the press. Their behaviour in relation to the lies they tell about "vexatious" patients is unethical and the opposite of acting with integrity.


Never discriminate unfairly against patients or colleagues.
These doctors routinely use their positions of power to promote the view in the wider media that critics of their work are either 1) mentally ill 2) vexatious 3) are motivated by stigma towards mental illness. This seems like discrimination to me.


Never abuse your patients' trust in you or the public's trust in the profession.
Given the media lies and manipulation both of trial outcomes and of the mischaracterisation of patients, I'd say they are abusing patients' trust in the profession - such that many patients won't even go to the doctors any more due to the stigmatising treatment they can expect to receive.

Don't we have a case here given that a fair bit of this behaviour is documented in the press and was highlighted in the Alem Matthees' FOI hearing.

They don't have to go to every conference. However what you are saying relation to the GMC breaches is correct. EC and PW have seriously breached much of the GMC rules. If you want to complain to the GMC I am sure people on PR would help with this.

 

[Ysabelle-S]

I just found this on this site:

.

Dr Philip Hammond:

"I trained as a GP and worked as one for 20 years before retraining as an associate specialist in the young people's specialist Chronic Fatigue/ME service at the Royal National Hospital for Rheumatic Diseases NHS Fountation trust in Bath (the Mineral Hopsital). We work as a team of doctors, psychologists, physiotherapists, occupational therapists, support staff and managers under the leadership of Dr Esther Crawley."......

https://www.iwantgreatcare.org/doctors/dr-philip-hammond

.

 

[Yogi]

http://www.bbc.co.uk/programmes/p001d79q

It claims to be the only place where you can speak to a GP on a Saturday. Not sure if that refers to Esther though. Maybe you could even ask her help for your ME? Now wouldn't that be nice?

Good opportunity to phone in and talk about PACE fraud which she is ignoring.

 

[Countrygirl]

EC is well protected at the moment. GMC complaints are not effective.................yet.

 

[Stewart]

I just found this on this site:

Yeah, I was just typing something to this effect. No-one should expect Dr Hammond to ask his boss any difficult questions tomorrow...

 

[AndyPR]

Also remember that, if you haven't already, you can sign the OMEGA petition https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

With Crawley as the ME expert I hate to think how MEGA is going to end up and that thought would be enough for me to sign it if I hadn't already.

 

[Countrygirl]

Dr Philip Hammond
I trained as a GP and worked as one for 20 years before retraining as an associate specialist in the young people's specialist Chronic Fatigue/ME service at the Royal National Hospital for Rheumatic Diseases NHS Fountation trust in Bath ............under the leadership of Dr Esther Crawley. I also work as stand up comedian . I am a longstanding campaigner for compassion, safety and transparency in the NHS,Patients First and Kissing It Better.

I work under Esther Crawley as a stand up comedian for transparency in the NHS.

Not sure where the kissing it better fits in though.

 

[Yogi]

Apparently EC will be on BBC again tomorrow

https://twitter.com/i/web/status/794624548683608064

Now Hammond can't plead ignorance of CBT/GET PACE Fraud.

https://twitter.com/i/web/status/794632626766278656

https://twitter.com/i/web/status/794634167665434624

https://twitter.com/i/web/status/794635053645135873

 

[alex3619]

I've been trying to do that for nearly 40 years @eafw, but here I am propped up on the sofa with cushions struggling now to cope with my ever-deteriorating health and pain. Where did I go wrong?

You forgot the superglue and duct tape. Its not enough to pull yourself together, you need those to hold it together afterwood. Obviously.

 

[Barry53]

There seems to be a major charm offensive underway here.

 

[Countrygirl]

There seems to be a major charm offensive underway here.

It hasn't worked on me, I'm afraid.

 

[Barry53]

It hasn't worked on me, I'm afraid.

Unfortunately there are a great many people it does seem to work on. I do not think we know how to play that game properly.

 

[snowathlete]

What I see lately is what we have seen before - they adapt to the times and the criticisms, changing their narrative to make what they are doing sound reasonable to those unfamiliar with the details, while portraying critics as unreasonable and they try to make their efforts sound authentic, including making it sound compatible with biological etiology or even continuing biological processes. But these are only words.

What never changes are the types of treatments, the avoidance of objective measures, the poor methodology of research, the poor analysis and spinning of results, the denial of even the possibility of harm, the ignoring of all evidence that goes against the treatments they want to promote, claims stated as if they are fact that are not proven by the evidence. No matter what the narrative, these are the telltale signs of poor quality research that deliver no actual benefit to patients, and that is why patients will not stand for it.

There has also been change in the patient community in the last few years that ultimately mean this kind of thing is not going to be allowed to continue without challenge as it largely was before. Patients are not going to accept it and will increase their efforts as much as is needed to bring a stop to it. Patients know their only chance of getting better is through genuine high quality biological research and in combination with that doing away with the kind of nonsense that holds it back.

Patients have also abandoned their fear of being smeared, because they realized that we get bad mouthed anyway, and there is no way past the fire but through it. In fact, the more they have to resort to trying to make patient critics look bad the more we know that we are winning by exposing what is really happening; so it actually gives us strength. Outside academics and journalists have got involved and together we are exposing and challenging dodgy research in peer-reviewed journals, in the press and with authorities. Patients are protesting and these movements are growing and becoming more organized. There has been so much spin and propaganda that patients, and patient-organizations have got wise to it, have developed skills at spotting it, and are challenging it.

The easy old ways are gone. The real question now is can researchers who have spent years carrying out poor quality research along the lines of PACE truly adapt to produce worthwhile research that meets the standards that are now expected? I think the answers is likely no, but if that is the case I see their position in the field of ME/CFS becoming more and more difficult every year and it won't be long until the funding dries up entirely for the types of research that have enjoyed many easy decades where it was possible to get away with producing wasteful nonsense. Those days are gone.

 

[TiredSam]

There seems to be a major charm offensive underway here.

I certainly find it thoroughly offensive.

This BPS media blitz is taking up far too much of my time lately, but what the heck I feel like a rant so here goes:

Time to end the damaging battle over chronic fatigue syndrome

There’s something we can agree on. Shall we start by ending the smearing, labelling and name-calling of those with different views?

All those interested in progress on helping those with CFS should unite in the push to find therapies, be they behavioural or biomedical, says Esther Crawley

Right-ho, I’ll switch of my critical faculties for the cause then.

We know almost nothing about chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME).

If by “We” you are referring to yourself and your BPS buddies, thank-you for that admission. If you ever find the time to take your heads from up your arses you may find that the rest of the world has been rather busy lately. Read the IOM Report (rather than Shorter’s summary of it) or accept and invitation to a IiME conference, why don’t you?

And yet it causes misery and suffering for hundreds of thousands of people, including many children.
One in a hundred teenagers in the UK miss a day a week or more of school because of it, and 2 per cent are probably missing out on the normal stuff that teenagers do. Those I see in my clinic are sick with disabling fatigue, memory and concentration problems, and terrible pain. On average, they miss a year of school, on top of which mothers give up work and siblings suffer.

So that’s the children, the mothers and the siblings covered. Got a problem with mentioning the fathers?

Yet progress on this illness is being hampered by controversy, with some people disputing both its cause and treatment.

Yes, you are, please stop it. “some people” is a phrase used by old ladies in the queue at the butchers when talking about the woman behind them, as in “some people are no better than they should be” said just loud enough for the gossiped-about woman to hear, with a knowing glance thrown in for good measure.

Some still dismiss it as a non-illness; others decry attempts to treat it with psychological therapy.

“Decry”. Nice word.

The result is that few patients are offered treatment and there is almost no research on the condition.

That few patients are offered treatment and that there is almost no research on the condition is true. That this is a result of “some people” “decrying” is pure assertion on your part without any evidence, and a viewpoint recently strongly criticised by a FOI tribunal judge.

This illness is more common than leukaemia and more disabling than childhood arthritis, but few specialists treat it.

So why did you engage in a turf batte which ended with one of the few that did (Nigel Speight) being suspended by the GMC?

How have we arrived at a position where the biggest reason for teenagers to miss school long-term is rarely studied and society allows so few to receive treatment?

It’s only one of the biggest reasons for them to miss school according to your telephone survey of their parents. Great diagnostic practices from the epidemiologist of the MEGA trial. Sure I’m united in the push to find blah blah.

Part of the difficulty is that CFS/ME is not a single illness. Both children and adults have different clusters of symptoms that may represent different illnesses with different biology, requiring different treatments.

Please elaborate on what you know about adult ME. “Different biology” implies that the treatments will also need to be biomedical, although I am of course united in the push to make progress on behavioural treatments for biological illnesses, having turned off my critical faculties so I can’t be accused of not being a team player on this one.

Although CFS is poorly studied, we do know it is heritable and is triggered by something, usually an infection, to which children who get CFS are more genetically vulnerable

In teenagers, we know hormones are affected: for example, the natural steroid cortisol is at a low level in the morning. We also know that there are changes indicating that metabolism is different from normal. We now know that it isn’t an individual “bug” that is important in leading to CFS, but the severity of the initial illness caused by the bug.

More research needed
We need more research to understand what happens to keep people so sick, long after the initial illness has passed.

We most certainly do, so kindly step aside so that scientists with expertise in infection, genetics, hormones, metabolism etc can get down to work. What was your skill-set again? Telephone surveys or something.

Some people say that because we haven’t worked out the biology …

Sorry to interrupt again, but what is it with the use of the royal “we” throughout this article? Can you please say “they” when referring to the scientists engaged in biological research?

… the illness must be psychological. This is an extraordinary conclusion: there are plenty of illnesses we don’t understand, but that doesn’t mean we dismiss them as psychological.

I look forward to your public take-down of Mr Shorter then.

Changing someone’s behaviour is a potent stimulus to changing their biology. For example, altering how well a teenager sleeps will change their biology, including daily cortisol patterns.

We’ve got sleep hygiene covered thanks, doesn’t take a million pound study, it’s pacing 101. We know. It can be put on a web-page. In fact someone has, years ago, without charging a million quid for it:

http://www.cfidsselfhelp.org/library/solutions-sleep

Thanks anyway. We'll call you. Seriously.

So what does the field need? We need …

Sorry, was that a rhetorical question? Perhaps people who have spent the last 3 decades suffering from the illness might have a view? Oh go on then, you tell us, what do we need?

… very large studies that look at the underlying biology, including genetics, to understand the different subtypes of CFS.

Got something to sell have you?

In the UK, the National Health Service is probably the place to do them.

I’m not even going to comment on that. Except to say that some countries are no better than they should be.

While we await the results, we need better treatments for the large number of people with the condition who want to get back to school or work. We are currently recruiting patients for the largest study so far to investigate internet-delivered cognitive behavioural therapy for children and teenagers throughout the UK.

Oh right, you have got something to sell. Sorry, I was being sarcastic earlier. Shouldn’t this article be in the advertising section?

Patients are desperate for this trial …

They’re desperate, that’s for sure.

... yet some people are still trying to stop us.

“some people” again. Who exactly? Sufferers who clearly don’t want to get better? And who is "us"?

The fighting needs to end. Those of us who want to help people with CFS …

Does that include those of us who suffer from CFS? Are you implying that “some people” suffering from CFS are outside the group “those of us who want to help people with CFS”? How does that work exactly? And since when is expressing reasonable concerns and frustration that they are never addressed the same as "fighting"?

… must work together so that this important illness is not ignored any longer.

I thought the whole point of FITNET was to divert much-needed ME research funding into your pocket while the illness continues to be ignored. Have I misunderstood something? Must be a communication breakdown somewhere.

By the way, are you the same lady who conducted the SMILE trial into Parker the Circle-Drawer's Lightning Process? Instead of spending a huge sum of money which Bristol University has refused to disclose, you could have just read a 12-page thread about it on PR, which has been there since 2010:

http://forums.phoenixrising.me/inde...-the-lightning-process.3720/page-9#post-83848

From which I quote:

We learned the 'affirmation' and stood on the floor on paper circles with key words written on them.
Here is the big secret of what we had to say while standing on paper circles - WHEN YOU FEEL A SYMPTOM

SHOUT- STOP! (stand on the paper STOP)
SAY- I HAVE A CHOICE ( stand on the paper CHOICE)
SAY- YOU CAN CHOOSE THE PIT OR THE LIFE YOU LOVE ( you then stand on the LIFE YOU LOVE circle)
SAY- I CHOOSE THE LIFE I LOVE
SAY- WELL DONE, YOU ARE A FANTASTIC GENIOUS, YOU ARE ON TRACK! I AM WITH YOU EVERY STEP OF THE
WAY (you are being your own coach here)
ASK YOURSELF - WHAT DO I WANT?
ANSWER YOURSELF- I WANT ENERGY AND HAPPYNESS LIKE (you say something that means energy etc. to you)
ASK YOURSELF- HOW WILL I GET THIS?
TELL YOURSELF- BY STOPPING EVERY NEGATIVE THOUGHT
EVERY NEGATIVE EMOTION
AND DOING THE LIGHTNING PROCESS.

There are a few more short affirmations and that's it you are cured of M.E. We all DID leave on the third day full of hope and newly found confidence and told that no-matter how we felt in the future ALWAYS SAY WERE WERE CURED OR THE PROCESS WILL NOT WORK !!!! These coaches are very good at their job but I can assure you they can not cure you of M.E. Think about it PAPER CIRCLES AND AFFIRMATIONS. The four of us all were 'high' for a few weeks or months and did indeed do more than usual but sadly all relapsed.

Is circle-drawing a behavioural or biomedical therapy? That was a rhetorical question, it's actually miraculous, and has been around since the 1st century, but study it anyway just to cover all the bases, why don't you:

http://www.jewishencyclopedia.com/articles/11711-onias-honi-ha-me-aggel

 

[Barry53]

I certainly find it thoroughly offensive.

Etc ...

I know it is a full on rant ... but it really is a very good and rather well reasoned rant

 

[Jan]

I certainly find it thoroughly offensive.

This BPS media blitz is taking up far too much of my time lately, but what the heck I feel like a rant so here goes:



There’s something we can agree on. Shall we start by ending the smearing, labelling and name-calling of those with different views?



Right-ho, I’ll switch of my critical faculties for the cause then.



If by “We” you are referring to yourself and your BPS buddies, thank-you for that admission. If you ever find the time to take your heads from up your arses you may find that the rest of the world has been rather busy lately. Read the IOM Report (rather than Shorter’s summary of it) or accept and invitation to a IiME conference, why don’t you?



So that’s the children, the mothers and the siblings covered. Got a problem with mentioning the fathers?



Yes, you are, please stop it. “some people” is a phrase used by old ladies in the queue at the butchers when talking about the woman behind them, as in “some people are no better than they should be” said just loud enough for the gossiped-about woman to hear, with a knowing glance thrown in for good measure.



“Decry”. Nice word.



That few patients are offered treatment and that there is almost no research on the condition is true. That this is a result of “some people” “decrying” is pure assertion on your part without any evidence, and a viewpoint recently strongly criticised by a FOI tribunal judge.



So why did you engage in a turf batte which ended with one of the few that did (Nigel Speight) being suspended by the GMC?



It’s only one of the biggest reasons for them to miss school according to your telephone survey of their parents. Great diagnostic practices from the epidemiologist of the MEGA trial. Sure I’m united in the push to find blah blah.



Please elaborate on what you know about adult ME. “Different biology” implies that the treatments will also need to be biomedical, although I am of course united in the push to make progress on behavioural treatments for biological illnesses, having turned off my critical faculties so I can’t be accused of not being a team player on this one.



We most certainly do, so kindly step aside so that scientists with expertise in infection, genetics, hormones, metabolism etc can get down to work. What was your skill-set again? Telephone surveys or something.



Sorry to interrupt again, but what is it with the use of the royal “we” throughout this article? Can you please say “they” when referring to the scientists engaged in biological research?



I look forward to your public take-down of Mr Shorter then.



We’ve got sleep hygiene covered thanks, doesn’t take a million pound study, it’s pacing 101. We know. It can be put on a web-page. In fact someone has, years ago, without charging a million quid for it:

http://www.cfidsselfhelp.org/library/solutions-sleep

Thanks anyway. We'll call you. Seriously.



Sorry, was that a rhetorical question? Perhaps people who have spent the last 3 decades suffering from the illness might have a view? Oh go on then, you tell us, what do we need?



Got something to sell have you?



I’m not even going to comment on that. Except to say that some countries are no better than they should be.



Oh right, you have got something to sell. Sorry, I was being sarcastic earlier. Shouldn’t this article be in the advertising section?



They’re desperate, that’s for sure.



“some people” again. Who exactly? Sufferers who clearly don’t want to get better? And who is "us"?



Does that include those of us who suffer from CFS? Are you implying that “some people” suffering from CFS are outside the group “those of us who want to help people with CFS”? How does that work exactly? And since when is expressing reasonable concerns and frustration that they are never addressed the same as "fighting"?



I thought the whole point of FITNET was to divert much-needed ME research funding into your pocket while the illness continues to be ignored. Have I misunderstood something? Must be a communication breakdown somewhere.

By the way, are you the same lady who conducted the SMILE trial into Parker the Circle-Drawer's Lightning Process? Instead of spending a huge sum of money which Bristol University has refused to disclose, you could have just read a 12-page thread about it on PR, which has been there since 2010:

http://forums.phoenixrising.me/inde...-the-lightning-process.3720/page-9#post-83848

From which I quote:



Is circle-drawing a behavioural or biomedical therapy? That was a rhetorical question, it's actually miraculous, and has been around since the 1st century, but study it anyway just to cover all the bases, why don't you:

http://www.jewishencyclopedia.com/articles/11711-onias-honi-ha-me-aggel

Thank you Tired Sam for that fantastic post, I didn't think I would smile today until I read this.

 

[taniaaust1]

No IIME have asked them and the CMO and Lancet and Wessely but they have refused.


This is just propaganda and they really think we are stupid.

lol that shows how much they really want to "unite". Yes its all just propaganda.

 

[taniaaust1]

There are actually a lot of good things in this article compared to the typical media articles - the acknowledgments of the following:

- that CFS/M.E. is not a single illness
-that we do not know much about it
-that it differs in children and adults
-that treatments don't work for everybody
-that CFS/M.E. is different to normal fatigue
-that patients do want to be able to do things
-that CFS is heritable
-that the metabolism is affected
-that just because the biology of CFS is not understood it does not mean it should be considered a psychological illness
-that the use of behavioural therapies does not imply it is a psychological illness [

If this wasnt just propaganda, they'd be acting on those things they said eg if they truely believe ME/CFS is different to fatigue (chronic fatigue), why on earth arent they only recruiting those who have post exertional fatigue in their studies rather then recruiting people who have just fatigue and just one symptom.

The part about ME/CFS in children and adults being different, is just to justify the research they want to do on kids seeing the PACE trial failed. This whole thing is just propaganda and about trying to make themselves look better to the ME/CFS community and to others. Her trial wont go ahead if the ME/CFS community refuses to enrol in it.

This is put out to try to fool people into thinking that they actually are okay but these ones are anything but that. The heat has been turned onto them and they do not like it, they need to make themselves appear reasonable.

Till crawley and buddies stop using "subjective" results instead of objective ones and till they stop recruiting people with just chronic fatigue into their studies rather then just focusing on ones with just post exertional fatigue who do have actual ME/CFS, we really cant believe these ones intend to do good.

Their true colours show though their actual actions they can fool some with words eg those who are newer to ME/CFS who havent had the experience of what goes on with all this.