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Scans & links to what lots and lots of (UK-based) medical websites, textbooks etc. say about ME/CFS

Keith Geraghty

Senior Member
Messages
491
well White and co have written a paper from their perspective - it would be interesting to look over the very same material and write up a paper from a patient perspective or look at how ME/CFS is written about in medical texts v current medical understanding eg the medical texts v the IOM or NIH reports on ME/CFS. I think it would be pretty easy to find a clear bias towards a psychiatric slant on ME

Im happy to put effort into this - i could be helped by others eg Tom K and others to write it up, but what would speed things up would be if someone could send me a file of everything the psych people looked at and then I can look over the same text

K
 

A.B.

Senior Member
Messages
3,780
well White and co have written a paper from their perspective - it would be interesting to look over the very same material and write up a paper from a patient perspective or look at how ME/CFS is written about in medical texts v current medical understanding eg the medical texts v the IOM or NIH reports on ME/CFS.

It would be a good response to point to important material that the psychiatric perspective omits, while also pointing out how weak the evidence for CBT and GET really is - which is all they have.

The IOM and NIH report as you said.

This review of (some) exercise related abnormalities distinct from sedentary controls: http://www.medizin.uni-tuebingen.de/transfusionsmedizin/institut/eir/content/2014/94/article.pdf

A good overview:
The biological challenge of myalgic encephalomyelitis/chronic fatigue syndrome: a solvable problem
http://www.tandfonline.com/doi/full/10.1080/21641846.2016.1160598
 

Keith Geraghty

Senior Member
Messages
491
i wouldnt necessarily focus on disproving their paper - id just do a sort of replication study, whereby you re-do the exact same thing, just showing a different perspective ie that the medical literature is biased and weak and inconsistent for example (if this is the case found)
 

user9876

Senior Member
Messages
4,556
i wouldnt necessarily focus on disproving their paper - id just do a sort of replication study, whereby you re-do the exact same thing, just showing a different perspective ie that the medical literature is biased and weak and inconsistent for example (if this is the case found)

Are the textbooks used through out the world or would each county have different texts and in this case the potential for different advice. I imagine that any new textbooks in the US would talk about the IoM report. I was wondering if looking internationally would give a wider perspective?
 

Seven7

Seven
Messages
3,444
Location
USA
@Tom Kindlon This is a great find and a great opportunity for educate / update material.

1) What do we have published we can use instead that is widely accepted (maybe a good excerpt from OIM report).
2) What is the plan to contact this material's owner to update old material by the one we can provide / reference.

Just tell me how I can help pls.
 

wastwater

Senior Member
Messages
1,271
Location
uk
This American,encyclopedia of Autoimmune diseases isn't too bad it has 7 pages on cfs mentioning:Immunology HPA NMH and some experimental treatments, its from 2003 my copy, I don't think the new one will have changed much.Its by a guy from the john Hopkins centre for Autoimmune Disease research.
Not too heavy on the usual mush of CBT/GET maybe things were better in 2003
Good section on MS
link https://books.google.co.uk/books/ab...une_Diseases.html?id=zKgMHabsTwMC&redir_esc=y
 
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Tom Kindlon

Senior Member
Messages
1,734

Tom Kindlon

Senior Member
Messages
1,734
Clinical Neurology (Fowler, Scadding) 9780340807989 https://www.dropbox.com/s/w39j7ohn39e3hac/Clinical neuro2.jpg?dl=0
unspecifie  d.jpg


unspecifie d.jpg https://www.dropbox.com/s/vgqqkvaa4e1g8mm/Clinical neuro3.jpg?dl=0
 

GreyOwl

Dx: strong belief system, avoidance, hypervigilant
Messages
266
Thanks @Tom Kindlon. I was going to ask you to also include the references on which the texts relied, but I can see that references are optional for many of the claims made in these texts.

@Keith Geraghty, I'll get started on collating this info on Friday, my time.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
I'll take the lead - they only produced a 3-4 page paper (basic) if different people volunteer to assist me I will oversee this paper - one person has contacted me already, more welcome - just PM me and we will get the ball rolling

any other paper ideas just contact me also


This is really interesting. There are some clearly non-evidence based claims, eg the statements that SSRIs are effective for depression - this is disproven by RCTs of SSRIs for depression in CFS patients. Likewise, claims about boom-bust, etc are speculation, with no evidence.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia