Prof Stephen Holgate on CFS: 'we need a fresh view"

[oceanblue]

This came from a Nature news item that I'm sure will be discussed for other reasons too, but I liked these comments from Stephen Holgate:

In Britain, the MRC is accepting research proposals for a new programme devoted exclusively to CFS. The goal of the programme is to draw top-notch scientists into the field, says Stephen Holgate, an immunopharmacologist at the University of Southampton School of Medicine, UK. "Part of the difficulty is that we don't have very many good scientists working in the field," he says.

Proposals for the 1.5-million programme, due by 7 June, must include at least one scientist who does not currently work on CFS. "I know it's small fry, but at least it's a start," says Holgate. "We want a fresh view."

 

[eric_s]

Immunopharmacologist... this sounds very good for us.

 

[eric_s]

Omg... "life after XMRV". Of course we can't be 100% sure about anything, but i am honestly disappointed by Nature and Science. I don't think this is the best one can do. We have multiple labs where extremely capable and experienced people are finding XMRV or related viruses. How can you then say this, even if the people saying XMRV is lab-created and the findings stem from contamination are capable and experienced as well?

At a recent workshop on CFS, John Coffin, a retrovirologist at Tufts University in Boston whose team showed that XMRV is a laboratory hybrid unlikely to cause a natural human infection1, made a plea to patients.

Coffin's team showed? By these standards Mikovits' and Lo's teams showed association... Now who's right?

Oh, no, Wessely worries about ME/CFS research... I think now we are lost :headache:
And further down he says the conduct of ME/CFS advocates will convince another group of decent scientists to stay away from ME/CFS. I agree we should be careful with these things, but i guess he knows he can only survive in the field of ME/CFS as long as "decent scientists" are absent or silent...

 

[Angela Kennedy]

Omg... "life after XMRV". Of course we can't be 100% sure about anything, but i am honestly disappointed by Nature and Science. I don't think this is the best one can do. We have multiple labs where extremely capable and experienced people are finding XMRV or related viruses. How can you then say this, even if the people saying XMRV is lab-created and the findings stem from contamination are capable and experienced as well?

Coffin's team showed? By these standards Mikovits' and Lo's teams showed association... Now who's right?

Oh, no, Wessely worries about ME/CFS research... I think now we are lost :headache:
And further down he says the conduct of ME/CFS advocates will convince another group of decent scientists to stay away from ME/CFS. I agree we should be careful with these things, but i guess he knows he can only survive in the field of ME/CFS as long as "decent scientists" are absent or silent...

Let's see those comments Wessely made:

http://www.nature.com/news/2011/110...s+-+Most+recent+articles)&utm_content=Twitter

"At a recent workshop on CFS, John Coffin, a retrovirologist at Tufts University in Boston whose team showed that XMRV is a laboratory hybrid unlikely to cause a natural human infection1, made a plea to patients. "We really went in with the idea of being able to push this field forward," He said. "Nobody went in with the idea of disproving this." He added that criticisms of his motivations from patient advocates were "painful" to read.

Wessely says although he is used to being subject to abuse, other researchers were "absolutely appalled" by their treatment. "This will convince another large group of decent scientists to say: oh no, I would rather go find the gene for homosexuality or do work on images of the prophet Mohammed than do this."

 

[currer]

This comment does not reflect well on Professor Wessely.

A little inflammatory, wouldn't you say?

 

[eric_s]

I bet if he were to say this on ME/CFS Forums they would find some nice names for him

 

[Snow Leopard]

Wessely says although he is used to being subject to abuse, other researchers were "absolutely appalled" by their treatment. "This will convince another large group of decent scientists to say: oh no, I would rather go find the gene for homosexuality or do work on images of the prophet Mohammed than do this.

Dear Simon, I don't think you are helping with comments like this.

As for Dr Holgate, I couldn't agree more..

 

[insearchof]

Actually I would like to see more comments like this from Simon. It gives a greater insight into his character.

He is digging himself a very big political hole with that sort of material.

As for the miniscule funding..........how much was allocated to the ridiculous Pace Trial?


What will they be studying and or finding, with Wessley et al hovering in the background? Immunopharmological response to CBT anyone?


The last week or so, has been hard with all the negative news around XMRV. I dont think things are over, but I think it is sobering to consider -what will the future might ook like if it does not and what our communities response might be.


Even if XMRV hobbles along, WPI is going to need A LOT of financial support, but the WPI wont be able to survive on private funding alone. They are struggling to do so at the moment...... and their ability to secure grants will further be diminished if the DSM 5 proposals go through in the USA - which is expected to affect a large number of people in the USA with ME CFS FMS.



The Complex Somatic Symptom Disorder (CSSD) diagnostic category being proposed for the new psych diagnostic manual (DSM 5) is so broadly drafted, that it will catch many of us with ME CFS FMS and XMRV. In fact, it will apply to all medical illnesses, but our illnesses are very vulnerable because of the way it has been drafted. If you have not taken the time to look at this - then I suggest you do so. See: http://forums.phoenixrising.me/showth...-Help-is-here!



So in addition to those diagnoses, people in the USA may also get a psychiatric diagnosis - bolted on to our medical records by doctors who do not understand our illnesses or who do not wish to!.



If that took place, then there is a chance that secondary diagnosis could become prominent in the eyes of many treating doctors and those in the USA would have a harder time accessing appropriate medical testing and care.


Further, I would expect a large education campaign by the psych lobby and I am sure that this would just cement existing views that these illnesses are largely psychosomatic.


If and when that happens, our illness may well become entrenched in the mentality of the medical profession and the government as a somatoform psych illness. If that happens serious research will beging to dry up. Perhaps the government grants committees would be even less inclined than they are presently, to allocate funds for biomedical research to these illnesses.


This is just a couple of the potential consequences of these proposals. Others can be found here: http://forums.phoenixrising.me/showth...-Help-is-here!


If you dont want to see this happen, then please put an hour or so of your time aside to put in a short submission.

I have started a thread to help people do this here ttp://forums.phoenixrising.me/showth...-Help-is-here!


The proposals will directly affect all Americans - but as the DSMs are used to varying degrees outside the USA they will impact us all. Further we know that the USA is quite influential, so other parts of the world look to developments taking place in the USA.



There is an overview of the topic and a list of issues to help you write one here: http://forums.phoenixrising.me/showth...-Help-is-here!


The deadline is June 15th 2011

 

[Enid]

Nice to read Stephen Holgate's comments oceanblue and with the depth of research (pathology) findings (XMRV may still play a role too), who could be slightest bit interested in Wessely et al. "musings" on ME/CFS. "We need a fresh view" indeed.

This is not meant to ignore the valuable work - analysis/failures of the psyches - done so well here and showing they (psyches) had nothing to bring to the understanding of the disease.