Crawley: How to deal with anti-science BRS2017

[BurnA]

Trial By Error, Continued: An Open Letter to the Board of the CFS/ME Research Collaborative

I wonder if he should also have addressed this (or similar letter) to the British renal society. It was, afterall their shindig, they were the ones who gave EC a platform. I wonder if they condone her speech now.

 

[BurnA]

Any ideas on how to give David Tuller's letter the best/most exposure possible without going too far?

Why would we not want to go too far

I don't think there are any magical ways, or we probably would have done it by now.
Put pressure on Holgate to reply might be the best thing to do.
Or ask the individual members of the CMRC to state publically if they support what EC had to say during her lecture.

 

[Chrisb]

David Tuller is obviously perfectly capable of looking after himself, and has available the means and the fora to do so.

I was beginning to feel surprised at the absence of any statement yet regarding the other injured party. Does Crawley not have ready access to a competent media management organisation which might advise on appropriate action which she might take to quickly mitigate any damage caused.

 

[user9876]

David Tuller is obviously perfectly capable of looking after himself, and has available the means and the fora to do so.

I was beginning to feel surprised at the absence of any statement yet regarding the other injured party. Does Crawley not have ready access to a competent media management organisation which might advise on appropriate action which she might take to quickly mitigate any damage caused.

The issue for Crawley is that when they have controlled the story they have managed that very effectively in the UK press but she has lost control. The story now becomes one of her accusing a journalist of libel without any evidence and in doing so trying to mislead others in the medical profession.

I can't imagine the CMRC making any type of statement. They have supported this type of thing from the beginning signing up to harassment campaign with the SMC. I am sure they realize than forcing an examination of the issue will lead to them being embarrassed.

 

[Chrisb]

The issue for Crawley is that when they have controlled the story they have managed that very effectively in the UK press but she has lost control. The story now becomes one of her accusing a journalist of libel without any evidence and in doing so trying to mislead others in the medical profession.

I can't imagine the CMRC making any type of statement. They have supported this type of thing from the beginning signing up to harassment campaign with the SMC. I am sure they realize than forcing an examination of the issue will lead to them being embarrassed.

I was thinking more in terms of the possible need for a rapid correction and apology, if one be needed.

 

[trishrhymes]

Crawley's employer, Bristol University, should also be informed, I think. Any volunteers?

I don't feel able to write to them, as I have already written to the Vice Chancellor a few months ago about her research, and had no response. I think it needs to be someone with either a charity behind them, or professional standing.

@charles shepherd, is this something you could do as spokesperson for the MEA?

If anyone does contact the university, I think they need to be sent copies the screenshots from her lecture, pointing out why they are inappropriate and unprofessional.

 

[Barry53]

The issue for Crawley is that when they have controlled the story they have managed that very effectively in the UK press but she has lost control. The story now becomes one of her accusing a journalist of libel without any evidence and in doing so trying to mislead others in the medical profession.

I can't imagine the CMRC making any type of statement. They have supported this type of thing from the beginning signing up to harassment campaign with the SMC. I am sure they realize than forcing an examination of the issue will lead to them being embarrassed.

I suspect these folks are becoming increasingly baffled, confused and distinctly worried. The tactics they have done year in year out in the past are all they know, and they now begin to realise no longer work they way they used to. The only other option they can probably think of doing is ... nothing! But I think it must also be dawning on them that that will no longer work either ... so long as the world at large does not allow it to.

 

[Demepivo]

@trishrhymes How about a petition? (via MEAction?)

 

[trishrhymes]

I'm not sure a petition is the best way to go here.

I think Esther Crawley's behaviour needs to be spelled out to her employer in a calm and rational way by someone who will be listened to.

They need to be told that she is making public accusations of harassment by patients and others who have made legitimate criticisms of her work such as David Tuller. That she is, in effect, slandering her critics.

They need to be told that she is giving talks to other doctors encouraging them to hide their data and refuse legitimate requests for information, and to treat these as harassment.

They need to be told she is using words like drug addiction (correction 'substance abuse') and crime in her descriptions of ME patients, and alongside these words using photographs of people that she has no right to use and who have nothing to do with ME.

They need to be told also about her appalling slurs on ME patients and their parents, especially mothers.

They need to be told about her unscientific research methods and anti-science behaviour, and that she is going around telling sob stories making herself out to be the heroic scientist standing up to harassment.

They need to have their eyes opened to her whole unprofessional, slanderous, unscientific denigration of and mistreatment of patients.

They need to be told that she is carrying out research of such poor quality that it will bring herself and Bristol University into disrepute, as PACE has done.

I don't think a petition would work to get a complex message like this across.

Do you get the feeling I'm a little bit angry...

 

[JaimeS]

Honestly, it's a really keen setup to claim harassment by patients. It means anytime patients object, the public has been groomed beforehand to see our objections as hysterical and violent.

All the better to continue unethical behavior unimpeded.

 

[Research 1st]

One thing we may have missed here ladies and gents which I wanted to share and may help you social media disability advocates on here who use Twitter/Facebook to defend patients against relentless professional level discrimination.

Well there was a single study by a Dr Park, in a not so small number of 400 patients. that found a risk of Chronic Kidney problems.

''The result is as follows - GFR 60-65 is 43%, 65-70 is 45%. Even in stage 2 classification we found 88% of CFS/ME patients were close to CKD. What this means is that these CFS/ME patients will be CKD patients in the near future without any diabetes or hypertension''.

CFS/ME MAY BE MAJOR CAUSE of CHRONIC KIDNEY DISEASE IN NON-DIABETIC POPULATIONS
By Dr. Tae H. Park

Source: Journal of Invest in ME, Volume 1, Issue 2. 2007. Page 7.
Link to PDF

I thought that was kind of ironic, under the shadow of EC apparently warning the British Renal Society with perculiar slides that CFS patients are somatizers criminals and drug takers and a threat to the free world!

Maybe someone can kindly let the nice Sridharan fellow see there are Kidney issues when CFS patients not defined how EC defines them (F48.0 Oxford Chronic Fatigue) are studied using biomedical Science, and not 'ideas' of psychiatrists that conveniently never runs any assays to confirm that psychiatry isn't putting the CFS patients at any risk with their beliefs about patients minds keeping them ill, not a chronic organic illness.

 

[JaimeS]

Not published, though, @Research 1st -- can't find anything on GFR and ME/CFS on PubMed.

A lot of good observations are collected by our physicians, but never recorded / reported in peer-reviewed journals.

Wait, wait... 400 patients? ... let me take a look at that...

[Edit: Honestly, this is totally shocking. Why ISN'T this published someplace else? You'd think a study this dramatic would have a lot of traction in a nice kidney disease journal at the very least...]

 

[RogerBlack]

Wait, wait... 400 patients? ... let me take a look at that...

[Edit: Honestly, this is totally shocking. Why ISN'T this published someplace else? You'd think a study this dramatic would have a lot of traction in a nice kidney disease journal at the very least...]

And - well - BS.

I've heard lots of thoughts about other conditions due to CFS.
If 88% or anything close to it were coming down with serious kidney diseases - it'd have shown up.
It'd also have shown up on the various (though somewhat poor) investigations into all-cause mortality for CFS.

I'm not saying in principle that there aren't wierd biomarkers, but it's not leading to serious kidney disease.

 

[Sean]

Yeah, colour me skeptical on this one.

 

[Jonathan Edwards]

Hi
I am not a member of BRS. I don't think there is any formal membership as far as I know. I do not know any specific persons to contact in BRS regarding this other than whatever is there on their website. I am not related to BRS organisation in anyway. Sorry.

I have been away and not kept up with this thread. Dr Sridharan clearly has a lot to learn about the responsibilities of being a doctor - maybe he has learned something this month. It is not quite like being a schoolgirl on Facebook. Naivety does not help people get well.

The comment above seemed odd to me so I checked out the BRS. It sounds like a professional association but the professional association for renal physicians is the Renal Association. BRS, as said, has no members. It is not a body funded by members sharing a desire to educate themselves. So who is it funded by? There are some further oddities. Instead of members it has 'affiliates' including Association of Renal Industries. The address associated with BRS is:

Executive Business Support Ltd
City Wharf
WS14 9DZ

The blurb includes:

[BRS began] to promote formal dialogue between the many specialist groups supporting professionals involved in the care of patients with kidney disease

This is a very peculiar piece of wording that seems to be designed to give a clear message to certain people and to be as obscure as possible to everyone else. The impression I get is that this is a body set up to sell influence - a sort of renal Science Media Centre maybe. I suspect it is heavily subsidised by industry but in a very carefully disguised way - purporting to be a meeting place for all sorts of professionals. One of the 'affiliates' is a psychology group.

The more I hear of these networks the creepier things appear. In the USA the commercial motivation of professional societies is up front. Nobody pretends to be there for the patients. In the UK things seem altogether more furtive and underhand. There was a major push against this sort of thing int he 1990s but it seems to have crept back in in a much more pernicious form recently.

 

[JaimeS]

My reply feature doesn't seem to be working, so @RogerBlack -- 88% wouldn't show up as having 'serious' kidney disease. If you look at charts of glomerular filtration rate, that isn't in the danger-zone, it's just not-quite-normal. The forty-some-odd percent with a GFR below 60 is still pretty surprising, even though it's not serious kidney disease, either.

However, I'm not surprised that minor to moderate dysfunction hasn't 'shown up'. I had symptoms of overt rhabdomyolysis off and on early in the illness, but no one ever tested me for anything kidney-related. I 'couldn't' be having kidney issues, I hadn't had blunt-force trauma to them and I was too young.

We can miss a lot when it isn't part of standard medical testing and there's very little funding to do research.

 

[Dx Revision Watch]

...I can't imagine the CMRC making any type of statement. They have supported this type of thing from the beginning signing up to harassment campaign with the SMC. I am sure they realize than forcing an examination of the issue will lead to them being embarrassed.

Well said.

Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC)

Tymes Trust: The inside story on the Collaborative, August 2014

https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf

 

[Ysabelle-S]

I have been away and not kept up with this thread. Dr Sridharan clearly has a lot to learn about the responsibilities of being a doctor - maybe he has learned something this month. It is not quite like being a schoolgirl on Facebook. Naivety does not help people get well.

The comment above seemed odd to me so I checked out the BRS. It sounds like a professional association but the professional association for renal physicians is the Renal Association. BRS, as said, has no members. It is not a body funded by members sharing a desire to educate themselves. So who is it funded by? There are some further oddities. Instead of members it has 'affiliates' including Association of Renal Industries. The address associated with BRS is:

Executive Business Support Ltd
City Wharf
WS14 9DZ

The blurb includes:

[BRS began] to promote formal dialogue between the many specialist groups supporting professionals involved in the care of patients with kidney disease

This is a very peculiar piece of wording that seems to be designed to give a clear message to certain people and to be as obscure as possible to everyone else. The impression I get is that this is a body set up to sell influence - a sort of renal Science Media Centre maybe. I suspect it is heavily subsidised by industry but in a very carefully disguised way - purporting to be a meeting place for all sorts of professionals. One of the 'affiliates' is a psychology group.

The more I hear of these networks the creepier things appear. In the USA the commercial motivation of professional societies is up front. Nobody pretends to be there for the patients. In the UK things seem altogether more furtive and underhand. There was a major push against this sort of thing int he 1990s but it seems to have crept back in in a much more pernicious form recently.

Thanks for investigating them, Prof Edwards. I hadn't even considered they might be a shady outfit. To say my view of the medical profession and their different organisations/associations has taken a hammering over the past three decades would be an understatement. I'm thankful for the decent doctors, but not enough are speaking up.

 

[Dx Revision Watch]

THE BRITISH RENAL SOCIETY (BRS)

https://britishrenal.org/aboutus/



Registered with the Charity Commission

THE BRITISH RENAL SOCIETY

Company Number: 4249181

http://beta.charitycommission.gov.uk/charity-details/?regid=1091024&subid=0

Aims & activities
The advancement of education in the subject areas of renal disease & renal replacement therapy in the U.K. To run symposia for the discussion & dissemination of knowledge of renal care. To create a multi-professional group to monitor, maintain & improve standards of care & comfort to those suffering from renal disease. To provide funding for patient-centred research projects.

Annual Report and Accounts Year End 31 December 2015:

http://apps.charitycommission.gov.uk/Accounts/Ends24/0001091024_AC_20151231_E_C.PDF

 

[Ysabelle-S]

Well said.

Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC)

Tymes Trust: The inside story on the Collaborative, August 2014

https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf

What is in that document is utterly disgusting. It just shows the extent to which they are desperate to control the narrative, bringing in the harassment claims, and this line here: "Working with trusted journalists to cover the problems associated with CFS/ME research." Yes, we know all about them co-opting journalists, no doubt through the usual professional appealing to professional networks, but that won't make either the scandal or the rightful criticisms of their quack 'research' go away. The level of abuse directed at ME patients and the shocking treatment at the hands of so-called medical professionals is going to come out sooner or later. The CRMC is not fit for purpose, and I have no faith in this organisation whatsoever.