2006 UK Gibson Inquiry - did it achieve anything?

[cfsStevew]

I have been looking at the attempts to sort out the scandal that many of us are having to live through with regard to lack of proper biomedical research and treatment for ME.

Newly invigorated by yet another self promoting article featuring Simon Wessely - I have decided I have to try to do something - but I dont want to waste my energy with schemes that will likely achieve nothing.

In discussion with Graham about his project contacting MPs - he informed me that infact Ian Gibson put together an enquiry in 2006 that indeed sought to answer these questions and request exactly this.

http://evaluatingpace.phoenixrising.me/givemethemoney.html

http://www.erythos.com/gibsonenquiry/Docs/ME_Inquiry_Report.pdf

My question is for anyone who knows - what did it achieve? It seems like nothing! In liue of this - what the hell can we do if they have a parliamentary inquiry but it still makes no difference - and the only major UK spend goes to the PACE trial?

 

[charles shepherd]

I was involved with the preparation of the Gibson Report

And while I didn't agree with everything that got inserted into the final document, it was an important part of a process involving patients, charities, politicians and sympathetic doctors to try and persuade the Medical Research Council (MRC) - which controls the major research pot in the UK - to start funding biomedical research and move away from their previous emphasis on funding research based on the psychosocial model of causation and management. The most well known example being the PACE trial.

Things moved slowly but all those involved (myself included) continued to try and persuade the MRC to re-examine their policy on ME/CFS, to start prioritising biomedical research, and funding biomedical research

The result was the setting up of the multidisciplinary expert group on ME/CFS (I was a member), the workshop at Oxford and the literature review, and the decision to produce a list of biomedical research priorities

The MRC then produced some ring fenced funding and invited applications relating to the priorities that were identified:
http://www.mrc.ac.uk/funding/science-areas/population-systems-medicine/cfsme/

along with highlight notices emphasising the importance of submissions relating to immune system dysregulation and neuropathology:
http://www.mrc.ac.uk/funding/how-we-fund-research/highlight-notices/cfsme-highight-notice/

Five research studies were funded at a total cost of around £1.5 million and this work is currently underway

Some members of the MRC Expert Group (myself included) then set up the UK ME/CFS Research Collaborative - in an attempt to bring together new and existing researchers, research funders, charities and the pharmaceutical industry

You will be aware of what was a very succesful two day conference in Bristol in 2014 which was almost totally devoted to biomedical research - infection and immunology in particular

I know many people still feel dissatisfied with both the MRC and Research Collaborative - but rather like an oil tanker changing course there has been a significant change in direction at the MRC and that is a considerable achievement

It also means that we have scientists like Professor Hugh Perry, Chair of the MRC Neurosciences Board, supporting research into the neuropathology of ME/CFS

Of course, the charity sector continues to play a key role in ME/CFS research - and probably always will

Having said all that, the amount of money going into biomedical research in ME/CFSthere in the UK remains pitiful when compared to other serious long term conditions. And it should not be left to the charity sector to fund vital research infrastructure - as we do with the ME Biobank at UCL:
http://www.lshtm.ac.uk/itd/crd/research/cure-me/ukmecfsbiobank/

This is a very rapid guide with plenty of gaps and is obviously a personal opinion

I am sure that others who were involved with the Gibson report and what happened next will have other views

 

[Min]

From the report:

Vested interests: The Group is particularly troubled about this issue: “There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies, particularly UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remains classified as a psychosocial illness, there is blatant conflict of interest here. The Group finds this to be an area for serious concern and recommends a full investigation by the appropriate standards body”.

The investigation has never been done. Prof White of PACE and GETSET works for re-insurance company Swiss Re.

I think the best thing we can do is donate to biomefical research run by charities that will have nothing to do with these psychiatrists, such as Invest in ME.

 

[cfsStevew]

I was involved with the preparation of the Gibson Report

And while I didn't agreee with everything that got inserted into the final document, it was an important part of a process involving patients, charities, politicians and sympathetic doctors to try and persuade the Medical Research Council (MRC) - which controls the major research pot in the UK - to start funding biomedical research and move away from their emphasis on funding research based on the psychosocial model of causation and management. The most well known example being the PACE trial.

Things moved slowly but all those involved (myself included) continued to try and persuade the MRC to re-examine their policy on ME/CFS, to start prioritising biomedical research, and funding biomedical research

The result was the setting up of the multidisciplinary expert group on ME/CFS (I was a member), the workshop at Oxford and the literature review, and the decision to produce a list of biomedical research priorities

The MRC then produced some ring fenced funding and invited applications relating to the priorities that were identified:
http://www.mrc.ac.uk/funding/science-areas/population-systems-medicine/cfsme/

along with highlight notices emphasising the importance of immune system dysregulation and neuropathology:
http://www.mrc.ac.uk/funding/how-we-fund-research/highlight-notices/cfsme-highight-notice/

Five research studies were funded at a total cost of around £1.5 million and this work is currently underway

Some members of the MRC Expert Group (myself included) then set up the UK ME/CFS Research Collaborative - in an attempt to bring together new and existing researchers, research funders, charities and the pharmaceutical industry

You will be aware of what was a very succesful two day conference in Bristol in 2014 which was almost totally devoted to biomedical research - infection and immunology in particular

I know many people still feel dissatisfied with both the MRC and Research Collaborative - but rather like an oil tanker changing course there has been a significant change in direction at the MRC and that is a considerable achievement

It also means that we have scientists like Profesor Hugh Perry, Chair of the MRC Neurosciences Board, supporting research into the neurology of ME/CFS

Of course, the charity sector continues to play a key role in ME/CFS research - and probably always will

Having said all that, the amount of money going into biomedical research in ME/CFS there in the UK emains pitiful when compared to other serious long term conditions.Aand it should not be left to the charity sector to fund vital research infrastructure - as we do with the ME Biobank at UCL:
http://www.lshtm.ac.uk/itd/crd/research/cure-me/ukmecfsbiobank/

This is a very rapid guide with plenty of gaps and is obviously a personal opinion

I am sure that others who were involved with the Gibson report and what happened next will have other views

Hi Dr Shepherd - thanks for your reply and also for your response to the article published in the Independent I referred to in my original post...

I guess its some huge tanker! I think 5 years after the Inquiry the £1.6m grants were announced...? If the MRC is more receptive that is great. I think we probably need many more large studies to get anywhere significant...the charity efforts are fantastic but as I understand it to make real ground the government has to get behind issues. Could we not replicate the recent Japanese study which found the inflammation? The Japanese government are apparently spending properly on this problem - and getting somewhere...

Im not an expert in the politics but am thankful that the inquiry did come to something. I was very impressed with the tonality of the Bristol conference. Progess is happening - which in a way makes it all the more annoying that the Wessely school is still trucking along with their bogus theory and work, and the Nice guidelines are still based upon this. Children still taken away from their homes by psychiatrists etc...all the while the stigma is still shouldered by the patients...

Dr Shepherd - what in your view is needed to spur on and improve the situation - increase spending on Biomedical studies?

 

[charles shepherd]

Hi Dr Shepherd - thanks for your reply and also for your response to the article published in the Independent I referred to in my original post...

I guess its some huge tanker! I think 5 years after the Inquiry the £1.6m grants were announced...? If the MRC is more receptive that is great. I think we probably need many more large studies to get anywhere significant...the charity efforts are fantastic but as I understand it to make real ground the government has to get behind issues. Could we not replicate the recent Japanese study which found the inflammation? The Japanese government are apparently spending properly on this problem - and getting somewhere...

Im not an expert in the politics but am thankful that the inquiry did come to something. I was very impressed with the tonality of the Bristol conference. Progess is happening - which in a way makes it all the more annoying that the Wessely school is still trucking along with their bogus theory and work, and the Nice guidelines are still based upon this. Children still taken away from their homes by psychiatrists etc...all the while the stigma is still shouldered by the patients...

Dr Shepherd - what in your view is needed to spur on and improve the situation - increase spending on Biomedical studies?

Reply

This will have to be very brief because it's after midnight and I'm about to go away for the next two days without e-communication

The Japanese study on neuroinflammation is potentially very important (as is the study from Brighton on neuroinflammation following interferon treatment that was presented at the RC conference in September) and I have discussed the Japanese results with a number of colleagues, including Professor Hugh Perry, who agrees that this study needs to be replicated.

The MEA Ramsay Research Fund has made some preliminary enquiries about commissioning a replication study but we still need a sound research group that involves neuroradiology and wants to do this study. And it would be a very costly study to fund because these type of scans are very expensive to perform. So I'm afraid I cannot report any significant progress here.

As for the future, we will be discussing this at the RC Board meeting tomorrow in London. But it has to consist of:

1 bringing in more researchers from various -ologies/scientific disciplines who are new to the field of ME/CFS research

2 securing more government funding - which isn't easy when so many diseases believe their research is underfunded

3 getting the pharmaceutical industry interested in supporting/funding clinical trials involving drugs which might be effective for both symptoms and the underlying disease process

4 applying more lateral thinking to what we already know about the abnormalities so far identified

I could go on but it's time to go to bed - I have to put the bins out by 7am before catching the train to London!

 

[Sean]

2 securing more government funding - which isn't easy when so many diseases believe their research is underfunded

This is true. But it is also demonstrably true that in comparison to other serious diseases we are grotesquely underfunded. The simple numbers don't lie.

 

[cfsStevew]

This is true. But it is also demonstrably true that in comparison to other serious diseases we are grotesquely underfunded. The simple numbers don't lie.

yes...the videos here illustrated it quite well...

Reply

This will have to be very brief because it's after midnight and I'm about to go away for the next two days without e-communication

The Japanese study on neuroinflammation is potentially very important (as is the study from Brighton on neuroinflammation following interferon treatment that was presented at the RC conference in September) and I have discussed the Japanese results with a number of colleagues, including Professor Hugh Perry, who agrees that this study needs to be replicated.

The MEA Ramsay Research Fund has made some preliminary enquiries about commissioning a replication study but we still need a sound research group that involves neuroradiology and wants to do this study. And it would be a very costly study to fund because these type of scans are very expensive to perform. So I'm afraid I cannot report any significant progress here.

As for the future, we will be discussing this at the RC Board meeting tomorrow in London. But it has to consist of:

1 bringing in researchers from various -ologies who are new to the field of ME/CFS research

2 securing more government funding - which isn't easy when so many diseases believe their research is underfunded

3 getting the pharmaceutical industry interested in supporting/funding clinical trials involving drugs which might be effective for both symptoms and the underlying disease process

4 applying more lateral thinking to what we already know about abnormalities so far identified

I could go on but it's time to go to bed - I have to put the bins out by 7am before catching the train to Londpn!

thanks for taking the time!

Im really happy to hear that there already has been discussion about trying to replicate the Japanese study. Im curious how much one of the scans costs? When I talked about the Japanese results one of my parents wanted to consider getting one for me although I didnt think it was really a useful pursuit!

Yes its the number 2 - as the videos made above by a sufferer make it clear - the spending really is paltry on ME comparative to the scale of the problem in patient numbers and levels of disability. That is the scandal - considering so many of my comrades suffer so much everyday with barely the recognition let alone useful treatments...

Im terms of treatments and lateral thinking I suppose we would need a more solid steer on the disease process to get close to something useful - although surely there could be some sub groups tested with the known immunomodulators and antivirals...surely that sort of trial would be the antithesis of the PACE trials - and focus and galvanise -ologists to get involved...

 

[Sasha]

The Japanese study on neuroinflammation is potentially very important (as is the study from Brighton on neuroinflammation following interferon treatment that was presented at the RC conference in September) and I have discussed the Japanese results with a number of colleagues, including Professor Hugh Perry, who agrees that this study needs to be replicated.

The MEA Ramsay Research Fund has made some preliminary enquiries about commissioning a replication study but we still need a sound research group that involves neuroradiology and wants to do this study. And it would be a very costly study to fund because these type of scans are very expensive to perform.

If you can get a team together, I hope you might consider a crowdfund, even if it's just to raise enough money to make the project attractively affordable to the MRC so that it would top up the money for full funding (as happened in Norway with the rituximab trial). PWME are very keen to get replications done, I think. And the MEA is a fairly big charity by ME standards and could reach a lot of donors.

Do you have a ballpark idea of cost that you feel able to mention?

 

[Graham]

The MRC has been playing games for years when it comes to funding biomedical research, claiming that all the applications were of poor quality (as opposed to the psychosocial ones that it chose to fund!!), or reporting to Parliament that it didn't recognise terms like "biomedical" and simply listing all the CFS studies it had supported (all of which were psychosocial). The funding of 5 small studies in 2012 was as much a reaction to the 2010 Early Day Motion signed by 123 MPs as to the advice of Expert committees. Recently, replies from the Chief Medical Officer state that the MRC does not ring-fence money for specific diseases: they have to compete for limited funds, even though the Chief Medical Officer's report of 2002 urged them to do so. And yet, as Charles said, in 2012 they did! It is just a game to them.

I really hope that the CMRC comes up with such strong advice that the MRC is forced to commit substantial funds into ME research, but I honestly do not believe this will happen unless MPs and the public make it very clear that their patience is exhausted. I do worry that, given its history and the proportion of psychiatrists in the CMRC, that it will continue to fund psychosocial studies and just a handful of small biomedical studies which are too small to influence medical procedures. The MRC is the only body that we have that can fund the large trials that are needed to come up with a biomedical test for the illness, and for treatment that NICE will recommend.

Remember that, prior to 2012, not a penny had been spent by the MRC on biomedical studies for the last 25, probably 35, years. Over that period there have been a few, very small, departmental investigations within the NHS, under the NIHR flag, most of which needed no funding, and few (any?) of which produced a final report. My estimate is that since the 1980s, the total funding into biomedical research, including the 5 studies in 2012, was around £2 million. Contrast that with the £9 million spent on HIV/AIDS in 2011 alone. If you were a gifted researcher, with areas like HIV, cancer, heart disease, dementia,… to choose from, would you risk your career on ME/CFS? That is why, although I really want the CMRC to succeed, I think there needs to be another parallel avenue of funded research opening up (perhaps the University of Anglia initiative with Invest in ME?).

Why is ME treated so badly? I think two key factors are that it is an illness that mainly affects women, so people are ready to assume it is just neurotic behaviour, and that it is an illness that does not pose a threat to the hierarchy. What leads me to this conclusion? Well partly the funding that went into HIV/AIDS: there was a lot of the attitude that this illness was a judgement on immoral behaviour back in the 80s, in much the same way that we were labelled with "yuppie flu", but that attitude was much more vicious. And yet lots of celebrities and officials leapt in to push for research. Was that because it was a threat to their lifestyle in many cases? And recently, when researchers thought that they had found a retrovirus (XMRV) in patients with ME, suddenly vast quantities of money were available to test it: after all, it now threatened the blood supply. But as soon as Ian Lipkin found that it was lab. contamination, said that he had made some important discoveries and wanted to continue, his funding was stopped. I rest my cynical case!

 

[Min]

Scientists should have been asking how lab contamination was getting into humans - via vaccines?

 

[user9876]

1 bringing in researchers from various -ologies who are new to the field of ME/CFS research

There is a sandpit process that the EPSRC (and the TSB (Technology Strategy Board)) use to bring together researchers from different fields to get new research proposals in different areas. I have talked to people involved in various such activities who have then gone on to get research grants. However, I think one of the arts or social science research councils tried to copy the process but it failed for them.

The basic idea is that when a strategically important area lacking research is identified then they organise a group of academics from related fields and disciplines into a two day facilitated meeting. The idea is to use this time to generate collaborative and multidisciplinary research ideas that will lead to proposals. I believe the events would go along with the availability of a pot of money to fund research.

It seems like a similar process could be useful for ME research pulling together the various ologies.

 

[biophile]

https://twitter.com/MEAssociation/status/531015234702835713/photo/1

Cartoon sketch:

Q: How goes the medical research?

A: We're currently looking into how many major diseases can be cured without any funding.

 

[K22]

No it didn't & im sorry I do not want UK charities posting "funnies" about the lack of research funds, I want action to change things as solve me/CFS now are doing calling for special measures & vastly increased funds.

UK charities have been far too reticent in their standing up to the MRC & NIHR over funding Since being brought "on board" through becoming members of various expert groups /collaboratives any criticism /holding to account seems to have gone out of the window, indeed reversed as magazines heralded how in 2012 we actually received more than USA in proportion to size etc that yr (not saying much!!). Our charities are now the MRCs biggest promoters & AFME has Syephen Holgste sitting on their research board.
As MRC are let off for being a "huge tanker to turn" patients like myself see our lives pass away profoundly disabled just waiting & others, eg Lynn Gildedale, Emily Collingridge & Lous Owen simply die. Always remember when compromising & acceding to proscranition that the severe are wasting away. If it was Stephen holgates daughter in bed , in pain he wouldn't accept the speed of progress so why should we? The Gibson reports recommendations are fair & strong, asking for £11 million ring fenced & should have been much more robustly argued for by the charities. We let this , just like the IOM report, slip through our fingers as we still preoccupy about arguing tit ftat about cbt & GET & focus now soley in terms of action on a once yearly collaborative conference which so far has been fruitless.

 

[K22]

The MRC has been playing games for years when it comes to funding biomedical research, claiming that all the applications were of poor quality (as opposed to the psychosocial ones that it chose to fund!!), or reporting to Parliament that it didn't recognise terms like "biomedical" and simply listing all the CFS studies it had supported (all of which were psychosocial). The funding of 5 small studies in 2012 was as much a reaction to the 2010 Early Day Motion signed by 123 MPs as to the advice of Expert committees. Recently, replies from the Chief Medical Officer state that the MRC does not ring-fence money for specific diseases: they have to compete for limited funds, even though the Chief Medical Officer's report of 2002 urged them to do so. And yet, as Charles said, in 2012 they did! It is just a game to them.

I really hope that the CMRC comes up with such strong advice that the MRC is forced to commit substantial funds into ME research, but I honestly do not believe this will happen unless MPs and the public make it very clear that their patience is exhausted. I do worry that, given its history and the proportion of psychiatrists in the CMRC, that it will continue to fund psychosocial studies and just a handful of small biomedical studies which are too small to influence medical procedures. The MRC is the only body that we have that can fund the large trials that are needed to come up with a biomedical test for the illness, and for treatment that NICE will recommend.

Remember that, prior to 2012, not a penny had been spent by the MRC on biomedical studies for the last 25, probably 35, years. Over that period there have been a few, very small, departmental investigations within the NHS, under the NIHR flag, most of which needed no funding, and few (any?) of which produced a final report. My estimate is that since the 1980s, the total funding into biomedical research, including the 5 studies in 2012, was around £2 million. Contrast that with the £9 million spent on HIV/AIDS in 2011 alone. If you were a gifted researcher, with areas like HIV, cancer, heart disease, dementia,… to choose from, would you risk your career on ME/CFS? That is why, although I really want the CMRC to succeed, I think there needs to be another parallel avenue of funded research opening up (perhaps the University of Anglia initiative with Invest in ME?).

Why is ME treated so badly? I think two key factors are that it is an illness that mainly affects women, so people are ready to assume it is just neurotic behaviour, and that it is an illness that does not pose a threat to the hierarchy. What leads me to this conclusion? Well partly the funding that went into HIV/AIDS: there was a lot of the attitude that this illness was a judgement on immoral behaviour back in the 80s, in much the same way that we were labelled with "yuppie flu", but that attitude was much more vicious. And yet lots of celebrities and officials leapt in to push for research. Was that because it was a threat to their lifestyle in many cases? And recently, when researchers thought that they had found a retrovirus (XMRV) in patients with ME, suddenly vast quantities of money were available to test it: after all, it now threatened the blood supply. But as soon as Ian Lipkin found that it was lab. contamination, said that he had made some important discoveries and wanted to continue, his funding was stopped. I rest my cynical case!

Well said Graham. Unfortunately as long as it's left to sick individuals to do the lobbying, rather than a concerted effort led by charities with health staff etc as with the MS Society & their recent end the treatment post code lottery campaign, we will just get swatted off like flies by the MAC/NIH . What we currently have is an establishment getting away with neglect, a few odd sick individuals trying to bring about change, a very fragmented heterogeneous community trying to get o n or wasting away depending on severity and charities who are In effect like a broken bridge as they retreat to largely a support only role, accept on the issue of benefits.