Submission to the Scottish Parliament by Jonathan Edwards

[MSEsperanza]

I am not quite sure what you are querying or suggesting @MSEsperanza.

Nor am I.

I forgot about the S4ME-Cochrane thread and just noticed that some of my vaguely posed questions already had been addressed there. Parts of my concerns will move to that thread soon.

comments I have myself received from referees in response to my various manuscripts about ME and PACE. There is a remarkably consistent message that 'OK we know this sort of evidence is unreliable but you should not raise it as a general issue'

I highly appreciate your endeavor and find these reactions more than sloppy.

What I tried to ask: Are there really no allies in the field of psychological medicine who, independently from ME related research, have pointed out that unblinded trials without objective measures are of null evidence and are regularly overrated in peer reviews and/or by Cochrane? And that this needs to change?

No scientists in the field of MS research, no scientists in the field of neuropsychiatric/ neuropsychologic research?

 

[Jonathan Edwards]

What I tried to ask: Are there really no allies in the field of psychological medicine who, independently from ME related research, have pointed out that unblinded trials without objective measures are of null evidence and are regularly overrated in peer reviews and/or by Cochrane? And that this needs to change?

No scientists in the field of MS research, no scientists in the field of neuropsychiatric/ neuropsychologic research?

A good point. I would hope that there are scientists in the MS field who would agree. MS trials moved over to the objective measure of MRI because of the problems of subjective clinical measures.

David Marks, the editor of Journal of Health Psychology seems to agree. Interestingly, the person who wrote criticising IAPT in JHP might not be quite so happy with a blanket criticism. Maybe James Coyne would agree with my analysis but I have a feeling even he has expressed reservations. It is hard to agree to the basis for virtually all research in you field being not much good. Carolyn Wilshire certainly seems to agree that the apparent positive result in PACE could be due to subjective bias.

 

[Dx Revision Watch]

@Dx Revision Watch
Any comment to inform a response?

Apologies for missing this Q, Amw66.

I am winding down towards retirement in August/September and in the interim, I am only working on my own projects and collaborations with Mary Dimmock.

I will add, however, that the statement:

"ME is now defined by the World Health Organisation ICD11 as 8E49 ‘post viral fatigue syndrome’ under the heading ‘Other disorders of the nervous system’ with the synonyms ‘benign myalgic encephalomyelitis’ and ‘chronic fatigue syndrome’."

needs to be read in the context of my May 2018 update on the status of the revision of the ICD-10 G93.3 legacy categories for ICD-11:

https://dxrevisionwatch.files.wordpress.com/2018/05/pvfs-timeline-v2.pdf

particularly these sections:

 

[Amw66]

Apologies for missing this Q, Amw66.

I am winding down towards retirement in August/September and in the interim, I am only working on my own projects and collaborations with Mary Dimmock.

I will add, however, that the statement:

"ME is now defined by the World Health Organisation ICD11 as 8E49 ‘post viral fatigue syndrome’ under the heading ‘Other disorders of the nervous system’ with the synonyms ‘benign myalgic encephalomyelitis’ and ‘chronic fatigue syndrome’."

needs to be read in the context of my May 2018 update on the status of revision of the ICD-10 G93.3 legacy categories:

https://dxrevisionwatch.files.wordpress.com/2018/05/pvfs-timeline-v2.pdf

particularly these sections:

many thanks @Dx Revision Watch
tagging @Emsho to enable this to be taken into account

 

[Emsho]

many thanks @Dx Revision Watch
tagging @Emsho to enable this to be taken into account

Thank you both! @Amw66 and @Dx Revision Watch