ME/CFS, XMRV, DSM-V and the British Medical Journal - 6 March 2010

G

Gerwyn

Guest
I wonder how longed they worked to hone the verbiage in this paragraph:

"But if the research community was underwhelmed, people with the syndrome were not. If true, these findings would have transformed the understanding of the illness and opened up new avenues of treatment. Some saw this as a definitive response not only to those few professionals who, they claim, continue to doubt the reality of the syndrome, but also to the larger number of professionals who believe that, irrespective of causation, rehabilitative treatments can reduce symptoms and disability. It is depressing that the first, untenable, view is too often confused with the second, a perspective that offers hope to patients and is backed by evidence."

...research community underwhelmed????? Not true.

"It is DEPRESSING..." Really? They are depressed that the CFS/ME community doesn't see a difference between the professionals who doubt the reality of the syndrome with those who offer bogus treatments, "backed by science".
I Think I,m wondering about collusion a doctor in london should know about the controversy re the diagnosis of the condition I am thinking out loud but when did she achieve honarary consultant status and how?
 

Countrygirl

Senior Member
Messages
4,443
Likes
22,379
Location
UK
Gerwyn;53321]I Think I,m wondering about collusion a doctor in london should know about the controversy re the diagnosis of the condition I am thinking out loud but when did she achieve honarary consultant status and how?

I have had a quick search and came up with the following:

McClure was made Honorary Consultant in Genito-Urinary medicine in 1992.

She gained her Ph.D. from Cambridge and worked for five years for the Institute of Cancer Research. She was awarded a D.Sc in medicine in 2002. At Imperial, she holds the Chair of Retrovirology and heads the section of infectious diseases.

Last year, (not sure of the age of the article, so it may or may not mean 2009) she was appointed Director, Research and Development for St Mary's NHS Hospital Trust.

She certainly isn't underqualified as a researcher!
 
G

Gerwyn

Guest
I have had a quick search and came up with the following:

McClure was made Honorary Consultant in Genito-Urinary medicine in 1992.

She gained her Ph.D. from Cambridge and worked for five years for the Institute of Cancer Research. She was awarded a D.Sc in medicine in 2002. At Imperial, she holds the Chair of Retrovirology and heads the section of infectious diseases.

Last year, (not sure of the age of the article, so it may or may not mean 2009) she was appointed Director, Research and Development for St Mary's NHS Hospital Trust.

She certainly isn't underqualified as a researcher!
What I,m really interested is her dual qualification what is a DSc in medicine is she medically qualified she must be but how
 
G

Gerwyn

Guest
Uk XMRV positives beware wolves in sheeps clothing

Wesselly and Mcclure have claimed that the BMJ misread the original proof copy of their BMJ article

Meanwhile, a different strategy is also being considered to reconcile these different findings: that new blood samples should be take"n from patients with diagnosed chronic fatigue syndrome and sent to laboratories capable of carrying out the analysis. This is likely to happen [not "This is unlikely to be soon"] This is quite a proofreading error!

nevertheless

On first reading this seems quite positive does it not.

I am sure that most people remember the debacle when imperial college offered to test patients with prostate cancer for XMRV but would not accept patients with CFS.They then pulled this in seeming disarray.Why would they want to exclude patients with CFS

If you read the comments in the bmj article above you would think that the idea was to take blood from CFS patients in the uk and send them to the wpi as at the moment it is the only group shown capable of doing the analysis

BUT consider the following scenario

The Imperial college develops a test that can detect XMRV in prostate cancer(I think this is what the hurried correction was about).

This is announced The imperial college lab then becomes a "laboratory capable of carrying out the analysis"

.They would have to ,in developing this test, exclude patients patients with CFS because negative results would prove their test did not work and positives would support the WPI.

The next step would be to recruit XMRV positive positive patients from the uk to be retested in laboratories using this new technique.

This technique would of course detect xmrv in prostate cancer but not have a prayer of doing so in CFS patients

A negative result would then be used to completely discredit the WPI .The results must be due to contamination they would cry

We would then have the Defreitas situation all over again.

This scenario could of course lie wholly in my imagination but if it is real the quest for XMRV in ME/cfs would be dealt a savage blow

To me this feels like a very clever trap

I can only plead that people avoid being retested in any lab which cannot show publically that its tests can detect XMRV in blood samples sent by the WPI and go on public record as doing so.

This scenario really frightens me


Corrections
Chronic fatigue syndrome and human retrovirus XMRV

The online version of this editorial by Myra McClure and Simon Wessely contains an error (BMJ 2010;340:c1099, doi:10.1136/bmj.c1099). We misinterpreted an authors proof comment relating to the eighth paragraph, which should read: Meanwhile, a different strategy is also being considered to reconcile these different findings: that new blood samples should be take"n from patients with diagnosed chronic fatigue syndrome and sent to laboratories capable of carrying out the analysis. This is likely to happen [not "This is unlikely to be soon"]
 
K

Knackered

Guest
I don't know a great deal about the Defreitas study, is it possible the virus Defreitas found was XMRV?
 

garcia

Aristocrat Extraordinaire
Messages
975
Likes
247
Location
UK
We misinterpreted an author’s proof comment relating to the eighth paragraph, which should read: Meanwhile, a different strategy is also being considered to reconcile these different findings: that new blood samples should be taken from patients with diagnosed chronic fatigue syndrome and sent to laboratories capable of carrying out the analysis. This is likely to happen [not "This is unlikely to be soon"]
Talk about a Freudian slip! I thought the original sounded a bit too honest!

I can only plead that people avoid being retested in any lab which cannot show publically that its tests can detect XMRV in blood samples sent by the WPI and go on public record as doing so.
This scenario really frightens me
Don't worry Gerwyn. This is not going to happen.
 
G

Gerwyn

Guest
I don't know a great deal about the Defreitas study, is it possible the virus Defreitas found was XMRV?
There are others who know more than me but her discovery was certainly quashed by political forces at least in my view
 
K

_Kim_

Guest
Let's see if all of this adds up when I get a response to the FOI I submitted to I.C. about the XMRV test they offered on their website.

By my calculations, I should be receiving a response from them by early next week (and julius sent in an FOI request soon after mine)
 
Messages
1,575
Likes
171
Charles Shepherd posted this to co-cure today

ME/CFS, XMRV, DSM-V and the British Medical Journal - 6 March 2010

Current issue contents:

http://www.bmj.com/current.dtl

This week's edition of the British Medical Journal is concentrating on ME/CFS and XMRV.

Besides having XMRV on the front cover there are seven other items:


1 Editor's choice: 'Let's proceed with caution' by Fiona Godlee.

2 Editorial: 'Chronic fatigue syndrome and human retrovirus XMRV' by Simon Wessely and Myra McClure (p489)

3 Letter: 'More than defeatism greets patients with ME' from Stephanie Munn (p495)

4 Letter: 'Severely affected, severely neglected' from Charles Shepherd (p495)

5 Observations/Medicine and the media: Science, chronic fatigue syndrome, and ME by Cathie Sudlow (p510)

6 Research highlights: Chronic fatigue syndrome and XMRV - reasons why the BMJ fast tracked the Dutch XMRV study and critical comments about the media publicity that accompanied publication of the Science paper in October 2009 (p516)

7 Fast Track Research: Prevalence of XMRV in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort (summary of key points on p520)


Up until now many clinical doctors in the UK have not even heard of XMRV and only a few knew about the possible link to ME/CFS.

Things are about to change....

There is also an editorial - 'If accepted, will fan the flames of false positive diagnoses' - on the first draft of DSM-V (p492)


Post by The ME Association: http://www.meassociation.org.uk
 
Messages
42
Likes
0
Sorry Knackered, I was told by a good source that unfortunately the virus was not XMRV.

Molly
Meant to include this...and leave it to your own minds to decide...;)

"DeFreitas spoke next. . . . 'Clearly this virus is not HTLV-two. We now have additional data that verifies that point.'. . .Then DeFreitas moved on to the most interesting aspect of her work: the virus's appearance. 'We've look at four of these five cell lines. We can see particles by electron microscope, but not extracellular virus,' she said. 'We are not looking for a C-type retrovirus.' The significance of DeFreitas's comment most likely was appreciated by most present: every known human retrovirus was a C-type."

Osler's Web
 

Frickly

Senior Member
Messages
1,049
Likes
39
Location
Texas
Thanks Islandfinn, Funny how the one disease that doctors and researchers avoided like the plague may become the center of the biggest medical discovery since HIV/AIDS. :Retro smile:
 

natasa778

Senior Member
Messages
1,774
Likes
2,450
Up until now many clinical doctors in the UK have not even heard of XMRV and only a few knew about the possible link to ME/CFS.
How many clinical doctors in the UK know anything about CFS?
 
G

Gerwyn

Guest
Charles Shepherd posted this to co-cure today

ME/CFS, XMRV, DSM-V and the British Medical Journal - 6 March 2010

Current issue contents:

http://www.bmj.com/current.dtl

This week's edition of the British Medical Journal is concentrating on ME/CFS and XMRV.

Besides having XMRV on the front cover there are seven other items:


1 Editor's choice: 'Let's proceed with caution' by Fiona Godlee.

2 Editorial: 'Chronic fatigue syndrome and human retrovirus XMRV' by Simon Wessely and Myra McClure (p489)

3 Letter: 'More than defeatism greets patients with ME' from Stephanie Munn (p495)

4 Letter: 'Severely affected, severely neglected' from Charles Shepherd (p495)

5 Observations/Medicine and the media: Science, chronic fatigue syndrome, and ME by Cathie Sudlow (p510)

6 Research highlights: Chronic fatigue syndrome and XMRV - reasons why the BMJ fast tracked the Dutch XMRV study and critical comments about the media publicity that accompanied publication of the Science paper in October 2009 (p516)

7 Fast Track Research: Prevalence of XMRV in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort (summary of key points on p520)


Up until now many clinical doctors in the UK have not even heard of XMRV and only a few knew about the possible link to ME/CFS.

Things are about to change....

There is also an editorial - 'If accepted, will fan the flames of false positive diagnoses' - on the first draft of DSM-V (p492)


Post by The ME Association: http://www.meassociation.org.uk
Hi Garcia I have just seny the following to the BMJ

erwyn j Morris,
psychologist
SA16 0AZ,
Stephanie Fulton

Send response to journal:
Re: Re Edtorial on Chronic Fatigue Syndrome



Dear Editor

I am puzzled that so little is made of the relationship between the Oxford criterea and the failure of recent studies to detect XMRV.

The following is a quote from one of theauthors of the Oxford criterea found in the CMO report of 2002 regarding said Oxford criterea.

"British investigators have put forward an alternative, less strict, operational definition which is essentially chronic fatigue in the absence of neurological signs [but] with psychiatric symptoms as common associated features.” [12]

would you seriously expect to find a virus in that population?

Given that the virus which XMRV evolved from is found concentrated in lymphoid tissue.Why on earth didn't British researchers look there as the Americans did?

If you went to a neurologist and he told you the following: " I can assure you that according to diagnostic critere created by my colleagues there is nothing wrong with you.Oh and by the way these diagnostic criterea are not internationally agreed " Would you be happy?

Competing interests: None declared

[Back to Article] [See other letters]

Contact us - Privacy policy - Web site terms & conditions - Revenue sources - Site map

HighWire Press - Feedback - Help - 2010 BMJ Publishing Group Ltd.