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Prof Esther Crawley's paper defines the symptoms of severe ME as PRS

lilpink

lilpink

Senior Member
Messages
988
Location
UK
slysaint said:
And this (EC) is the person the DWP, DoH, MRC,CMRC and NICE regard as an 'expert' on ME.:aghhh:
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And yet the MEA are immovable in response to any suggestion that they should leave the CMRC. I see no logic at best in that position and I see great distress to pwme at worst. How many times do patients have to revisit this 'stuff' before they (the MEA ) capitulate? And this is most definitely NOT off topic unless one has lost possession of one's marbles.
 
Hilary

Hilary

Senior Member
Messages
190
Location
UK
Something came to mind from an article in a professional journal I was reading recently (I am a counsellor):

"What is most extraordinary is that the current system of psychiatric diagnosis,embodied in the DSM (Diagnostic and Statistical Manual of Mental Disorders) and the International Classification of Diseases, has been openly discredited by the world's most eminent psychiatrists, including the very people who chaired the committees that wrote these manuals. This is something of which the general public and many professionals are largely unaware. For example, Dr Allen Frances, who chaired the committee that produced the fourth edition of DSM, has criticised the fifth and current edition in the strongest terms, saying: 'There is no reason to believe that DSM-5 is safe or scientifically sound..... disappointingly, 30 years of advancing knowledge has had no impact whatever on psychiatric diagnosis or treatment'."

It seems to me that psychiatry likes if possible to slap a medical label on people suffering emotional distress and difficulty (and preferably dish out medication accordingly) - and on the other hand they also like to convert clearly physiological conditions into some sort of psychiatric problem. Hmm seems to me they're just making it all up as they go along................ and feathering their own nests in the process.
 
Binkie4

Binkie4

Senior Member
Messages
644
@@charles shepherd, have you and the CMRC tackled Crawley about this? Is there any way the CMRC can be educated about what severe MEis?
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@charles shepherd wrote

QUOTE

Regarding the presentation by Dr Crawley to the British Renal Society conference:

Re: Dr Crawley

Below is the MEA position as expressed to the Board of the CMRC

The majority of the CMRC Board decided to issue a different statement .....

.......... What is needed is:

1 A clear statement from the CMRC which shows that we are not critical of people who have made perfectly justified FoI requests in relation to release of the PACE trial data

2 A clear statement from Esther that explains and clarifies what was said to accompany the various presentation slides that are now being sent over the internet. If I believed that people were make serious misinterpretations about what I had said at a lecture then I would make a straightforward public statement to put the record straight. That is what needs to be done.

Charles"

UNQUOTE


CS- This is very reasonable but they ignored you.

I imagine they would respond in the same way if you tackled EC about this issue.
The CMRC cannot move- they are as if " creationists" (@trishrhymes )
unable to be moved by science.

If you have no influence, why remain a member when the CMRC lives within a belief system which is anti science.

The influence you do have is to leave the CMRC with a FULL explanation of why this is necessary.

We have supported the MEA petition unreservedly, but the MEA's behaviour in relation to the CMRC is not supportable.
 
S

Starlight

Senior Member
Messages
152
This is sickening. This woman should be retired before she does any more damage.this is tota l insanity and it is truly worrying that she has set her sights on children who are unable to defend any scrap of health they might have.when you take loving caring parents out of the picture here the horror is too much. It is like something out of the dark ages and really frightens me especially as it is children involved. Is there an adult form of PRS? . I hope someone will put a halt to this woman soon,or at least keep her away from children.childhood ME is so awful in every sense and I am sorry to hear that you had this experience twice Revel.she sickens me to the core also and makes me want to weep also.And I'm sad to say she scares me.How can she be let loose...with vulnerable children. Sorry about the lack of capitals.
 
Countrygirl

Countrygirl

Senior Member
Messages
5,468
Location
UK
Large Donner said:
Are you familiar with the Eon Proctor case?
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http://www.meactionuk.org.uk/To_set_the_record_straight_about_Ean_Proctor.htm

In his post, Wessely states about these allegations: “the allegations were repeated once more in a book on ME produced by a UK writer. The hospital took legal action, as I recall, to protect the reputation of their paediatricians, and the book was withdrawn and reissued without that section”. Mr and Mrs Proctor have confirmed that, contrary to what Wessely here states, it was not the hospital that took legal action against the author (who was in fact Dr Anne Macintyre) but it was the two psychiatrists themselves (Drs Lask and Wessely) who approached Dr Macintyre, threatening to obtain an injunction against the book unless that particular section was removed from all subsequent issues, so in response to such a direct threat, it was duly removed.
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S

Sean

Senior Member
Messages
7,378
Keela Too said:
:confused: So trying to steal ME patients to psychiatry?? Sickening
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Yep. Just the standard arbitrary redefinition game, that has long been one of their core tactics.

---------------------------------------------------------

Crawley is blatantly breaking just about every scientific and ethical principle in the book. Her attitude and behaviour amount to little more than terrorising her patients and their families in a particularly cruel, distressing, and destructive way. She is past mere zealotry now, and heading into naked savagery.

There must be no more cooperation with any organisation or project involved with or benefiting Crawley. She must not be given even the merest hint of legitimacy or support by patients.

:mad::mad::mad::mad::mad::mad::mad::mad::mad::mad:
 
Seven7

Seven7

Seven
Messages
3,444
Location
USA
OK so I don't have permission to tweet directly to David but did somehow got it in there, if someone here has his email would be nice to get it to him with the explanation, also Coyne if possible,

Difference now is we are not alone on the press front, we need to pressure elegantly / smartly.
 
B

Barry53

Senior Member
Messages
2,391
Location
UK
Little is known about PRS or how to differentiate it from CFS/ME.
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They are saying that PRS and ME are two distinctly different conditions. Also probably tacitly conceding that if there is such a thing as PRS, their trials for people with ME would likely have also included people with PRS.
 
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Barry53

Senior Member
Messages
2,391
Location
UK
The assertion that PEM is a symptom of PRS sounds very insidious. Suddenly decided to invent a new distinguishing symptom of PRS, which oh-so-coincidentally happens to be a uniquely distinguishing feature of ME. She is certainly creative - better suited to an advertising agency I would have thought.
 
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ebethc

Senior Member
Messages
1,901
this woman is a real crackpot... does she have any influence? I don't know enough about her to know if anyone listens to her... How on earth does a study w SEVEN subjects even get published??

this reminds me of the excellent and scathing letter that Dr Insel/NIMH wrote after receiving the DSM 5 from the APA (american psychiatric assoc):

"The goal of this new manual, as with all previous editions, is to provide a common language for describing psychopathology. While DSM has been described as a “Bible” for the field, it is, at best, a dictionary, creating a set of labels and defining each. The strength of each of the editions of DSM has been “reliability” – each edition has ensured that clinicians use the same terms in the same ways. The weakness is its lack of validity. Unlike our definitions of ischemic heart disease, lymphoma, or AIDS, the DSM diagnoses are based on a consensus about clusters of clinical symptoms, not any objective laboratory measure. In the rest of medicine, this would be equivalent to creating diagnostic systems based on the nature of chest pain or the quality of fever. Indeed, symptom-based diagnosis, once common in other areas of medicine, has been largely replaced in the past half century as we have understood that symptoms alone rarely indicate the best choice of treatment."

https://www.nimh.nih.gov/about/directors/thomas-insel/blog/2013/transforming-diagnosis.shtml


The whole thing is great, so read it if you have the time... Hopefully, Dr Insel and other sensible people in the psych community can help quash the crackpots!

ps Dr Insel is now in the Bay Area, as I believe David Tuller is... Maybe they should become friends :)
 
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ebethc

Senior Member
Messages
1,901
One other thought about the theory Esther Crawley is promoting: I'm adopted and I met my biological family in my early 20s... My biological mother and her oldest daughter have 90-95% symptom overlap w me....What would E.C. say? that we have hypochondriac gene, vs a ME/CFS gene?

When I tell doctors about my biological mother and her daughter having the same symptoms, I get their attention.... It sickens me to think that before I told them that, they were minimizing my illness... I've seen it in their faces so many times, although less so now that there are better diagnostics... still so far from where we need to be in understanding and dx, so vulnerable to these crackpots..

Will the medical establishment ever learn? ulcers were caused by "stress" until h pylori was discovered...
 
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