Sonya Chowdhury in shock public defence of ME as a biomedical condition ;)

[Cheshire]

If you wish to dispute my claim, then I think the onus is on you to show that it is false, no?

Do you really think there is a single trace of psychobabble in Invest In Me's work? If so, you'll have to convince us.

 

[A.B.]

Complaints that one cannot have one's cake and eat it, too, are not merely intrinsically unhelpful, but also play into the hand of those, who are looking for any excuse to dismiss the patients as impossible to please or to reason with.

It's not a problem if BPS proponents think we are irrational, militant, impossible to please or reason with. We don't care about them. We care about establishing the foundations for solid biomedical research. Appeasement strategies do not work. The BPS model is not part of the foundation for good biomedical research. You can see what kind of results these people have obtained after 25 years.

There is far too much tollerance of the BPS model. If all patients united against it and demanded change things would change very quickly.

Worrying about coming across as unreasonable is playing right into the hand of the BPS proponents. They are trying to make us feel guilty for standing up for ourselves.

 

[taniaaust1]

This particular study does not seem particularly harmful, and could even be beneficial..

"Dr Crawley says: “We will use a national surveillance unit to contact more than 3,400 UK paediatricians and find out whether they have seen a child with severe CFS/ME in the previous month. We will collect information including their age, gender, how the child presented, what treatment they received, how long they were unwell and information to determine if other diagnoses have been considered (eg. anxiety, depression, eating disorders)."

umm not harmful? I can think of one repercussion which could come out of her collecting that kind of info on other drs and how they are treating their ME/CFS patients. Crawley is likely to dob in any doctors she comes across who arent using standard ME treatments and get them barred just like how Dr Sarah Myhill has been harrassed over and over and lost being able to practice at times for how she was treating ME patients cause other drs didnt approve and dobbed her in.

I seriously wouldnt like this kind of info in Crawley hands, I wouldnt want her getting other drs put under surveillance including how they are treating ME kids. Crawley could use the info to get rid of doctors who have different views on this illness opposite her own.

 

[Daisymay]

"Dr Crawley says: “We will use a national surveillance unit to contact more than 3,400 UK paediatricians and find out whether they have seen a child with severe CFS/ME in the previous month. We will collect information including their age, gender, how the child presented, what treatment they received, how long they were unwell and information to determine if other diagnoses have been considered (eg. anxiety, depression, eating disorders)."

umm not harmful? I can think of one repercussion which could come out of her collecting that kind of info on other drs and how they are treating their ME/CFS patients. Crawley is likely to dob in any doctors she comes across who arent using standard ME treatments and get them barred just like how Dr Sarah Myhill has been harrassed over and over and lost being able to practice at times for how she was treating ME patients cause other drs didnt approve and dobbed her in.

I seriously wouldnt like this kind of info in Crawley hands, I wouldnt want her getting other drs put under surveillance including how they are treating ME kids. Crawley could use the info to get rid of doctors who have different views on this illness opposite her own.

And I'd be worried it could lead to children being forced to do CBT/GET or else be taken into a psychiatric unit.

 

[taniaaust1]

And I'd be worried it could lead to children being forced to do CBT/GET or else be taken into a psychiatric unit.

yeah that too, she could report drs for not following standard treatment (CBT and GET)

 

[Large Donner]

.
.
There is nothing about any contract on the AFME link. I have already seen that statement.


Esther Crawley does not diagnose ME. ..She diagnoses children who are tired - she gives them a CFS diagnosis. She gives them advice on sleep, and then says they recover in six weeks.
.
Parents of very sick children with ME who have been treated by Dr Crawley, who do not recover with her sleep protocol, state that Dr Crawley then changes the child's diagnosis to one of Pervasive Refusal Syndrome (a psychiatric diagnosis), and then claims the child does not have ME.

.

That is it in a nutsehll.

The First issue is why on earth would AFME fund Crawley knowing what her track record is.

Secondly all contracts have two parties whom have to abide by the terms in the contract lest the other one can make a genuine claim to null and void the contract.

For example if a professional person can be show to be bringing the profession into disrepute, be of questionable ability, have serious and genuine outside concerns raised against them etc, it would normally state a cancellation clause in the contract between the two parties.

Failing that simple contract law could even be used if exact wording hasn't been explicitly expressed within the written contract.

It is now known that Nigel Speight was reported to the GMC with zero case to answer and numerous patients have been affected by that and the lack access to his skills and expertise. Esther Crawley also has numerous patients testimony on line alluding to her dubious practices to say the least.

How the AFME can just sit back and say, "Ah well we are in a contract with her", I just dont know.


If you had contracted a builder to extend your house and he left gaping wholes around the windows put in rotten foundations, didn't make the extension water proof and was still working on the job would you just say, "Ah well I have to let him finish and pay him the full amount cos we agreed he would build the extension". Would you still be doing this if numerous other people came to you and showed you his terrible work and explained the dangers to you and showed you that he is incapable?

Would you hell!!

 

[slysaint]

Don't think it's a secret:

https://twitter.com/i/web/status/785917051424612352

Christ alone knows why she's giving money to anyone with a track record like Crawley though, who's entire MO seems to be to obfuscate and confuse.

"Dr Esther Crawley, a consultant paediatrician at Bristol University and AYME's lead medical advisor, is one of the country's leading experts on the epidemiology and treatment of CFS/ME. Crawley said: "Having the illness does not mean it is a child protection case and some of the messages we have tried to get across to professionals is that chronic fatigue syndrome is really common; it affects an awful lot of children, it runs in families and so any one of those issues does not make it a child protection issue, it actually makes it what we would expect."

This could be why.

 

[CFS_for_19_years]

Complaints that one cannot have one's cake and eat it, too, are not merely intrinsically unhelpful, but also play into the hand of those, who are looking for any excuse to dismiss the patients as impossible to please or to reason with.

You seem to worry a lot about the image that we as PWME's have - you're worried about things like caricatures and whatnot. Most of us here are OVER it - we don't worry about being dismissed as impossible to please. You are not - that's fine, but you don't get to make decisions about how we act or respond.

I think if you read any of the threads about writing a letter to the CMRC, some people are very concerned about making reasonable demands, but no one is worried about being dismissed as impossible to please or reason with.

 

[eastcoast12]

Having EC involved with anything that has to do with cfs/me is equivilant to hiring Wakefield to oversee an autism study. It's that simple.
Wakefield was a gastro. What the fuck does he know about the brain an autism in general? Nothing, absolutely nothing. Aleister Crowly is a phsychiatrist. What the fuck does she know about biological diseases? Absolutely nothing.

She has a pet theory that's completely unfalsifiable that she keeps pushing into a field (biology) that has no place in modern biological science.
She has lied to the community and has shown to be unethical towards people who are sick with me/cfs or people who treat people with cfs/me.

In my mind there's no way she didn't realize that what they did with the pace trial was bullshit. I say that based on her actions of deflection, secrecy and continuing anti cfs/me patient propaganda. She knew pace was bulkshit. Plain and simple. She's a fraudster and a snake oil salesman and frankly dangerous.

 

[GreyOwl]

umm not harmful? I can think of one repercussion which could come out of her collecting that kind of info on other drs and how they are treating their ME/CFS patients. Crawley is likely to dob in any doctors she comes across who arent using standard ME treatments and get them barred just like how Dr Sarah Myhill has been harrassed over and over and lost being able to practice at times for how she was treating ME patients cause other drs didnt approve and dobbed her in.

I seriously wouldnt like this kind of info in Crawley hands, I wouldnt want her getting other drs put under surveillance including how they are treating ME kids. Crawley could use the info to get rid of doctors who have different views on this illness opposite her own.

I have read, in another thread, that her name is connected to what happened to Dr Speight.

 

[Jan]

I have read, in another thread, that her name is connected to what happened to Dr Speight.

And that harms many, many patients and families face the horrendous possibility of their child being taken into care. This study puts her in a position of great power, amassing so much knowledge re children's diagnoses.

 

[Barry53]

And that harms many, many patients and families face the horrendous possibility of their child being taken into care. This study puts her in a position of great power, amassing so much knowledge re children's diagnoses.

Intriguing isn't it, that people who do so much good for ME/CFS sufferers get trashed, by people who time will likely prove to have caused so much harm.

 

[Barry53]

... just like how Dr Sarah Myhill has been harrassed over and over and lost being able to practice at times for how she was treating ME patients cause other drs didnt approve and dobbed her in.

Dr Sarah Myhill seems to have done a lot of good work for ME/CFS sufferers. I would guess her problem is she readily speaks her mind about medical professionals, without fear or favour, when she thinks they are getting it wrong.

http://www.drmyhill.co.uk/wiki/CFS_-_treatments_which_are_not_worth_trying

Excerpt from above link:-

CFS - treatments which are not worth trying

Graded exercise
This is positively harmful when CFS is active. I find it quite extraordinary that so many doctors seem to advocate this as a treatment. It is as if they are unable to distinguish between CFS and lack of fitness! Let's face it, if graded exercise worked then the diagnosis could not possibly be CFS. The only possible explanation I can think of as to why this has stuck in the medical folklore is that after a physician has recommended this to the CFS patient, the latter never bothers to attend again for useless advice. The doctor then believes he has cured the patient because they don't come back. Has anybody else got any better explanation?

Cognitive behaviour therapy
The idea behind this is that the CFS patient does not exercise because he is afraid to because it makes him ill. CBT is all about getting round this fear. The trouble is that the patient is right - he is fearful of exercise because it really does make him ill! Trials of CBT show it is far more likely to make patients worse. CFSs initially can tolerate so much CBT because they do the exercises at the expense of other activities, not in addition to and this distorts the results of such trials. I have seen a great many CFSs made much worse by CBT!

 

[RogerBlack]

Dr Sarah Myhill seems to have done a lot of good work for ME/CFS sufferers. I would guess her problem is she readily speaks her mind about medical professionals, without fear or favour, when she thinks they are getting it wrong.
<snip>

Trials of CBT show it is far more likely to make patients worse. CFSs initially can tolerate so much CBT because they do the exercises at the expense of other activities, not in addition to and this distorts the results of such trials. I have seen a great many CFSs made much worse by CBT!

Not that I disagree with this - but she seems to perhaps be confusing GET and CBT in the latter.

Are there published results showing CBT being 'far likely to make patients worse' - I don't recall seeing them.
(same question for GET).

 

[worldbackwards]

Not that I disagree with this - but she seems to perhaps be confusing GET and CBT in the latter.

Are there published results showing CBT being 'far likely to make patients worse' - I don't recall seeing them.
(same question for GET).

There is frequent survey evidence from several countries that GET makes patients worse in 50% or more cases. Research tends not to show harms, but is more equivocal than widely thought (the withdrawal of approval for CBT and GET by the AHQR cited that positive studies tended to be for Chronic Fatigue only, and there was a much more mixed picture for ME/CFS studies).

CBT tends in survey evidence to be merely useless and degrading rather than actively damaging.

Sarah Myhill isn't always known for her hard and fast relationship with the facts imho.

 

[BurnA]

If you wish to dispute my claim, then I think the onus is on you to show that it is false, no?

Hallmark of pseudoscience.

Have you heard of Russell's Teapot ?

 

[Jan]

There is frequent survey evidence from several countries that GET makes patients worse in 50% or more cases. Research tends not to show harms, but is more equivocal than widely thought (the withdrawal of approval for CBT and GET by the AHQR cited that positive studies tended to be for Chronic Fatigue only, and there was a much more mixed picture for ME/CFS studies).

CBT tends in survey evidence to be merely useless and degrading rather than actively damaging.

Sarah Myhill isn't always known for hard and fast relationship with the facts imho.

Is there any evidence of GET making patients worse? Would be good for the letter.

 

[worldbackwards]

Is there any evidence of GET making patients worse? Would be good for the letter.

Apart from the surveys, I've seen studies that talked about it provoking deterioration in patients that took days/weeks to recover. I don't think any actual research has shown long term harms. Without knowing the mechanisms in the body it would be difficult to do. Studies of psychiatric treatments are not known for their robust reporting of harms at the best of times.

 

[Barry53]

CBT tends in survey evidence to be merely useless and degrading rather than actively damaging.

Sarah Myhill isn't always known for hard and fast relationship with the facts imho.

I don't know. I'm guessing she is talking about patients who, as part of their previous CBT experiences, were also induced to "be positive" and get on with things. So even if not officially GET, they would feel they had to do more than is really safe for them. Maybe brainwashed into over exerting, way beyond what their condition can tolerate? Possibly depends if the CBT practitioner confines themselves to CBT, or bundles "positive activity" inducements in with it too.

Begs the question: How likely is it that a CBT practitioner is not going to encourage ME/CFS sufferer to try and do more?

But I concede this is only a thought on my part.

 

[worldbackwards]

Begs the question: How likely is it that a CBT practitioner is not going to encourage ME/CFS sufferer to try and do more?

But I concede this is only a thought on my part.

I agree that it tends to cross over: I only have experience of GET, which I found damaging and nasty, with it's whole "not my fault, you're the one who isn't motivated" schtick.

My opinion would probably be best encapsulated by what the Countess of Marr said about it in the Lords:

I accept that, in some cases, CBT alone may be beneficial. I suspect that in the old days it would have been called “grin and bear it”. However, CBT is rarely offered without GET and ME patients know only too well—and their views are supported by some 4,000 papers on scientific and clinical research—that GET makes their symptoms worse.