"I am eating my pudding."
Can someone tell me:
1. where this quote attributed to Charles Sheperd came from and
2. whether he qualified the above remark by making mention of the fact that there have been no scientific studies to date that have directly considered whether XMRV is in fact the cause of CFS?
In answer to your first question, insearchof:
The quote comes from a thread on the ME Association's Facebook Wall.
The thread was started by the MEA's Tony Britton on 9 March.
The thread received over 125 comments, but Dr Ellen Goudsmit has removed a number of her own comments, so the integrity of the thread has been partially compromised.
In response to the 9 March 2011 Facebook Wall posting:
Fresh Doubts About Connection Between Mouse Virus and Human Disease - ScienceNOW news.sciencemag.org
Dr Shepherd wrote:
http://www.facebook.com/permalink.php?story_fbid=192110800828755&id=68630803256
Charles Shepherd
Having carefully considered all the published evidence - good and bad - since October 2009, and been in regular contact with virologists and retrovirologists, my gut feeling is that XMRV is not going to be the/a cause of ME/CFS and that antiretroviral drugs are not therefore the answer.
Results from further research studies will appear over the coming months, and it may turn out that XMRV - whatever its status - is found more commonly in people with ME/CFS. But I cannot see this finding turning into a diagnostic marker or test.
It's still too early to send the jury out on XMRV but I hope we can do so by the end of the year.
March 10 at 8:30am
He went on to post:
Charles Shepherd
Paul - if you look at what the MEA Ramsay Research Fund has been funding, is funding, and is intending to fund you will see that we take a very broad approach to what needs to be done in the way of biomedical research.
This obviously includes endocrinology, genomics, immunology, neurology, muscle studies, virology and treatment trials.
Our immediate priority is to get the biobank (blood samples) into operation as soon a possible - something that will cost in the region of 180K. The tissue and brain bank is another priority. Good quality proposals relating to XMRV are very welcome as well.
March 10 at 11:47am
Charles Shepherd
MEA Ramsay Research Fund information:
http://www.meassociation.org.uk/?page_id=1086
March 10 at 11:48am
Charles Shepherd
John - you are entitled to your opinion but I can assure you that nobody has misled me.
I make my mind up after reading all the published papers and talking/listening to a variety of people in any particular area of research in the case of XMRV this has included attending two lectures given by Dr Mikovits) that needs to be pursued.
March 10 at 11:59am
Charles Shepherd
Chris - Post mortem studies are a vital part of any research portfolio that is looking for the cause of a neurological (ie brain and nervous system) disease.
We have already demonstrated that you can find potentially important information - eg dorsal root ganglionitis - about the neuropathology of ME/CFS from examining tissues that could only be obtained from people who have sadly died.
And patient feedback to the feasibility study indicates that people with ME/CFS are very keen to donate brain, muscle and other tissue after death.
More information on the work in progress, if you want to follow this up:
http://www.meassociation.org.uk/?p=3765
March 10 at 1:15pm
Charles Shepherd
Richard -
I very rarely see or hear about partners of people developing ME/CFS and I am not aware of any research that has been done in this area. So I do not think that ME/CFS can be transmitted by a sexual route - as can obviously occur with retroviral infections like HIV.
The MEA has not funded any research to look at the incidence of ME/CFS in family members but there is a limited amount of information available to support the view that it can be more common in some families. The explanation remains uncertain but generic predisposition may well be one factor.
March 10 at 1:21pm
Charles Shepherd
Paul - I fully agree that we need to fund research into muscle function, pain and the possibility that the body's immune response through the production of cytokines may be causing some of these muscle symptoms. This is why we are funding Professor Julia Newton to carry out muscle research using MRS.
Not sure what you mean by 'peripheral elements of a neurological disease process' ??
That's it for now - I must go and do some work!
March 10 at 1:25pm
Charles Shepherd
More on research into muscle abnormalities in ME/CFS:
http://www.meassociation.org.uk/?p=975
March 10 at 1:28pm
Charles Shepherd
Jo -
If people with ME/CFS are dying, and want to donate their bodies to medical research (as was the case with Lynn Gilderdale) then surely there ought to be a proper facility in place to collect, store and use this tissue.
At present, the process I have to go through when notified of a death is far from satisfactory - hence our attempt to set up a proper ME/CFS brain bank and donor database.
This is not an academic exercise - we need to know much more anout the neuropathology of ME/CFS and having brain tissue to look at under the microscope etc could well lead to new forms of treatment.
One interesting abnormality which has already been found, that could explain the peripheral neuropathy symptoms that some people experience, is dorsal root ganglionitis.
March 11 at 7:44am
Charles Shepherd
Laurence
Constructive criticism welcome but no need to be rude.
I've been involved in the clinical and research side of this illness for almost 30 years. I have a vast library of information with all the key research papers from the the pas...t 60+ years and I've read most of them.
Yes, a large number of papers have been published but your figure (5,000) is a gross exaggeration when it comes to original and robust biomedical research in reputable peer review journals.
You are clearly unaware of the research section I prepare for ME/CFS/PVFS - An Exploration of the Key Clinical Issues . This MEA booklet is fully revised each year (current issue = January 2011) and provides referenced information to about 250 of the most important research papers, including those on XMRV.
More info here:
http://www.meassociation.org.uk/?p=4038
March 11 at 1:32pm
Charles Shepherd
And if you want to look at all the recent research paper abstracts from 2004 onwards, this is the summary that the MRC Expert Group prepared for the ME/CFS Research Workshop we organised in November 2009:
http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006509
Warning: it is 351 pages long.
March 11 at 1:43pm
Charles Shepherd
John
Firstly, I am not a Patron of the MEA.
I am a trustee and honorary (ie unpaid) medical adviser.
The two lectures I attended were the ones you refer to, where I very briefly met Dr M over lunch. And yes - I will be attending the conference again in May. If Dr M is available I will certainly have a word with her because I believe in talking to a whole spectrum of medical and scientific opinion on all aspects of this illness.
I hope this answers your Jeremy Paxman style questions.
March 11 at 8:51pm
Dr Shepherd then pulled out of this thread.
One of the comments from others participating in this thread was this, but you will have to go to:
http://www.facebook.com/permalink.php?story_fbid=192110800828755&id=68630803256
to see all the 125 comments that remain:
Flex Madeupsurname
Dr Shepherd you stated earlier that you talk to many virologists scientists and retro virologists. Please can you inform us when you consulted with Harvey Alter, Lo, Ila Singh, Kenny De Meirlier and Judy Mikovits. They have a wealth of scientific evidence under their belts on the subject of XMRV and MLVs. They also consider the two viruses to be one and the same in the sense that they are a new HGRV found in 70 -80% of persons with ME using Fukada and CCC.
They do not rely on or publish "gut "feelings" when dealing in scientific matters.
You claim you spoke to Judy Briefly over lunch. I feel this is somewhat a misrepresentation as the event you are talking about was the Invest in ME conference last year. The whole conference, some 400 attendees where on lunch, and you where asked by a well known advocate to come and meet Judy Mikovits. It was not of your own accord.
Your immediate response was, and I quote, "I am eating my pudding". I know this because I was standing right there.
Are the scientists you talk of who allow you to summarise your gut feelings for us Johnathon Stoye and Myra Mclure and others whom have published negative papers?
If they are not or they are not the only ones could you tell us which scientists it was who lead you to have such gut instincts.
March 13 at 10:45pm