UK Govt Turns New Leaf (Why the UK Loves ME/CFS More (!))

January 6, 2012

Posted by Cort Johnson

The Medical Research Council is a government agency responsible for coordinating and funding medical research in the UK. No slouch in the medical world, MRC funded research has lead to numerous breakthroughs including, way back in 1918, the discovery that influenza is caused by a virus, the discovery of the structure of DNA in the 1953 and most recently the 2009 Nobel prize for work on ribosomes.

The MRC’s record on innovative research pretty much stopped at CFS, however. Bogged down in a purely behaviorist stance towards the disorder, recent MRC funded studies have focused almost entirely on CBT with precious few funds devoted to pathophysiology. Check out the recent MRC studies below.

  • Randomised controlled trial of nurse led self-help treatment for primary care patients with chronic fatigue syndrome (1,340,000 US Dollars)
  • The PACE Trial – The PACE trial; A RCT of CBT, graded exercise, adaptive pacing and usual medical care for the chronic fatigue syndrome ($4,336,000 US Dollars)
  • Chronic Fatigue & Ethnicity ($253,000 US Dollars)
  • Training speech therapists in Cognitive Behavioural Therapy to treat Medically Unexplained Dysphonia: A Trial Platform ($404,000 US Dollars)
  • United Kingdom Primary Sjogren’s Syndrome Registry (UKPSSR) ($ 864,000 US Dollars)

Post Traumatic PACE Syndrome? Something has changed, however. Whether it’s due to the poor PACE results, the Rituximab finding or interest stirred up by XMRV the MHC is brewing a different cup of tea this time around.

Topping in at $4,336,000 Dr. White’s PACE trials ended up being easily the most expensive study ever done anywhere on ME/CFS and their tepid results must have left a bitter taste in the mouths of MRC group. The PACE trials were the second large and expensive government financed study (Belgium was first) that failed to show that CBT/GET was a cost-effective way (or effective) way of treating CFS.

Note that the list of current projects does not contain follow up funding for Dr. White’s PACE trials. Has the MRC soured on CBT? Time will tell but at least this round suggests that it may have.

Instead of a behavioral focus the latest round of MRC studies on CFS are focused ENTIRELY on pathophysiology. The studies may not be ground-breaking and two are peripheral to ME/CFS this slate of studies is a distinct change of ‘pace’ for the MRC.

Signs of Change at the MRC have been in the air. In 2009 the MRC convened a CFS/ME working group composed of researchers from across the spectrum. In 2010 the MRC’s priority list for CFS/ME research included examining the mitochondria, using antiviral agents or immune modulators to reduce symptoms, examining genetics more closely and looking for ‘neuro-biological’ changes. This is a decidedly different group than the one which funded behavioral or epidemiological studies year after year.

The Studies

The MRC is funding both CFS specific and non-CFS specific disorders

 CFS Specific Studies

  • Understanding the pathogenesis of autonomic dysfunction in chronic fatigue syndrome and its relationship with cognitive impairment. Principal investigator: Professor Julia Newton
  • Modulation of aberrant mitochondrial function and cytokine production in skeletal muscle of patients with CFS by supplementary polyphenols. Principal investigator: Professor Anne McArdle
  • Can enhancing slow wave sleep SWS improve daytime function in patients with CFS? Principal investigator: Professor David Nutt Institution: Imperial College London

Newton, the Brain and the ANS - With four ME/CFS studies published in 2011, Dr. Newton’s Newcastle group is one of the most productive anywhere. Heavily focused on the autonomic nervous (ANS) system functioning, the Newton study will examine both blood flows to the brain and ANS functioning to see if they can determine where the dizziness and difficulty standing in ME/CFS comes from.

McCardle on the Mitochondria - The McArdle study will use new and improved technology to examine mitochondrial functioning in the muscles. It follows on a series of studies that have suggested problems with muscle functioning including a Newton study last year which demonstrated low muscle pH during exercise and five studies by Fulle in Italy over the past 11 years finding altered mitochrondrial gene expression, increased oxidative stress, altered calcium transport and more in muscles of people with CFS.

 Nutt’s to No Sleep – A Sleep Drug for ME/CFS – The Nutt study will use ‘a drug’ (not mentioned) that enhances deep-wave sleep to see if increases in energy level and functionality occur once the sleep problem (hopefully) gets worked out.

 CFS Related Studies

  • Identifying the biological fingerprints of fatigue. Principal investigator: Dr Wan Ng
  • Persistent fatigue induced by interferon-alpha: a new immunological model for chronic fatigue syndrome. Principal investigator: Dr Carmine Pariante

Ng on Fatigue (and Sjogren’s Syndrome) – These two studies are reminiscent of NIH attempts to call studies into other disorders “ME/CFS research”. This is not to say they might not be helpful; the study to identify the ‘biological fingerprints’ of Sjogren’s Syndrome is intriguing given the high rates of fatigue in that disorder and the possible autoimmune connection in ME/CFS. The fact that Rituximab appears to be effective in reducing fatigue and other symptoms in both disorders suggests that Sjogren’s could be a good indirect model for CFS.
Another possible connection concerns the 40 fold increased risk of getting lymphoma present in Sjogren’s Syndrome. An unpublished study presented at the Reno conference two years ago suggested that Incline Village residents with ME/CFS had a very high incidence of lymphoma as well.

Sjogren’s Syndrome is another female disorder that receives disproportionately low funding. If these researchers find ‘biological fingerprints’ unique to Sjogren’s it’s possible they may show up in ME/CFS as well.

Pariante on Interferon alpha and Fatigue - Likewise the interferon alpha study could provide new information on immune causes of fatigue that could inform future ME/CFS research. Interferon-alpha is an anticancer and antiviral drug that has been shown to cause extreme fatigue and flu-like illness in a subset of patients. A Miller study published just last month provided a possible link between IFN-a induced fatigue and CFS. IFN-a provides another possible model into how ME/CFS occurs.

Why the UK Government Loves CFS Patients More

This isn’t chump change the MRC is throwing at ME/CFS either. It’s not clear if the money is being spread across the years or is going in one year but if it’s all being spent now, the US has a lot of catching up to do to meet the money commitment the UK govt is showing to ME/CFS.

The $2.5 million going to these studies is about .5% of the total budget of the MRC (@ 550 million dollars). If the NIH with its 32 billion dollar budget was funding ME/CFS at the same rate it would be spending a whopping 150 million dollars and the CDC would be spending $30 million for a grand total of 180 million dollars a year. (ME/CFS currently gets around $9 million/year ). The UK may have been stuck in the doldrums with their overt focus on behavioral treatments but if you ask who’s devoting more of their budget to ME/CFS research it’s easily the Brits. It appears that for all their wrong-headed research the UK at least considers CFS a serious condition while the US federal establishment continues not to.

 

18 comments

{ 17 comments… read them below or add one }

Tom Kindlon January 6, 2012 at 3:47 pm

Thanks for this, Cort.

The cost you quote for the PACE Trial isn’t the full amount of taxpayers’ money used, only the MRC contribution.

I think the figure to best figure to use is £5.0m = US$7.7m.

Below are some details I collected earlier in the earlier.

Also the percentage in the last paragraph should be 0.5% (not 5%)

——–

=====Source 1 =====
http://tinyurl.com/ydsv857
i.e.
http://www.rae.ac.uk/submissions/ra5a.aspx?id=176&type=hei&subid=3181

You are in: Submissions > Select unit of assessment > UOA 9 Psychiatry,
Neuroscience and Clinical Psychology > University of Edinburgh > RA5a UOA 9 –
Psychiatry, Neuroscience and Clinical Psychology University of Edinburgh

[..]

“the PACE trial (7 UK centres) of chronic fatigue syndrome (CFS) treatments
(MRC; £5.0M);”

=====Source 2 =====

From figures below:
£2,076,363 (MRC initial grant)
£1,800,600 (Dept of Health subvention)
£702,975 (MRC extra money)
£250,000 (Chief Scientist Office, Scotland)
——
£4,829,938 + DWP money (unknown)

(Yes this is the same web page but it is a summary of a different entry)

http://tinyurl.com/ydsv857
i.e.
http://www.rae.ac.uk/submissions/ra5a.aspx?id=176&type=hei&subid=3181

You are in: Submissions > Select institution > Queen Mary, University of
London > UOA 9 – Psychiatry, Neuroscience and Clinical Psychology > RA5a Queen
Mary, University of LondonUOA 9 – Psychiatry, Neuroscience and Clinical
Psychology
RA5a: Research environment and esteem

[..]

White showed that recovery from CFS is possible following CBT (Knoop et al,
2007). The MRC funded PACE trial, led by White , evaluates CBT, graded
exercise, adaptive pacing and usual medical care in the treatment of CFS, and
is over half-way completed (http://www.pacetrial.org/) (PACE trial MRC
04-09 £2,076,363, DH Central Subvention 04-09 £1,800,600; MRC PACE trial
extension 09-10 £702,975).
==================

SCOTTISH PARLIAMENT – WRITTEN ANSWER

2 December 2005

Health Department

Janis Hughes (Glasgow Rutherglen) (Lab): To ask the Scottish Executive what
funding it has awarded for chronic fatigue syndrome/myalgic encephalomyelitis
(CFS/ME) services or research since the CFS/ME short-life working group
reported in 2002.

(S2W-20924)
Lewis Macdonald:

NHS Boards are given unified budgets, increased by an average of 7.6% in the
current financial year, from which they are expected to meet the costs of
services for people with CFS/ME and all other chronic conditions. It is for
NHS Boards to decide how their unified budgets should be distributed, based on
their assessments of local needs.

The Chief Scientist Office (CSO), within the Scottish Executive Health
Department, has responsibility for encouraging and supporting research into
health and health care needs in Scotland. CSO is currently contributing
£250,000 to the Medical Research Council project ‘Pacing, Activity and
Cognitive behaviour therapy: a randomised Evaluation (PACE)’ which compares
different approaches to the clinical management of patients with CFS/ME.

Reply

Kathy D. January 7, 2012 at 1:23 am

That over $4.3 million was spent on the PACE trials makes me physically ill — and exacerbates the CFS symptoms. That money could have been used for real scientific studies which would actually help people. Or it could have been used for medical care and/or disability benefits.
What a colossal waste of resources, money and staff. And for what? To tell CFS sufferers to pace themselves? We know this. We have to do it or we’d be totally incapacitated and in pain from muscle and joint agony every minute. It’s a no-brainer.
I don’t see mention of the University of Liverpool which is studying CFS and what is it? Is it mitochondrial involvement? It seems important.
Well, I fainted today and banged up my knee and elbow. Luckily I was at home. Fell on a cardboard box on my way to the floor. I’d like to know why that happened. And how would CBT or graduated exercise help with that? The last time that happened I badly broke my ankle. I never fainted before I got CFS nor did I get a lot of physical problems like muscle pain so bad I can’t raise my arms to the keyboard or to read my newspaper.
The Rituximab studies may have helped to open up real scientific study in Britain. Or maybe bedridden patients finally impacted on some medical minds. Or other studies going on in the U.S. finding biomarkers, like Drs. Komaroff and Klimas and the Lights enlightened those across the pond.
Whatever is causing the change, fine, as we need answers and solutions quickly. Our lives depend on it.

Reply

Cort January 7, 2012 at 2:36 pm

I think the very size of the PACE trials may be causing some blow-back….They pumped so much money into them and got such mediocre results that in the years to come we may seem them as a kind of transition point for UK research. Time will tell.

I hope you feel better and we get some real answers soon!

Reply

Tony Mach January 7, 2012 at 2:15 am

Ah, the general change of direction is good. But with some studies, I ask myself if they heard of the work the Lights. Why don’t McCardle and Ng try to replicate the findings of the Lights? They are welcome to look for different bio-markers, but why first try to reinvent the wheel when other have already offered a answer – which would need replication.

Reply

Cort January 7, 2012 at 2:34 pm

I don’t know. I would love to see more validation of the Light’s work but these studies seem to be following prior British research….it seems like this is kind of a home-grown effort. For myself I think the McCardle study will be really interesting if they are using new and better tools to check out mitochondrial functioning. Nothing from MERUK showed up unfortunately – something of a surprise to me.

Reply

Tom Kindlon January 7, 2012 at 3:41 pm

Not exactly sure what you are saying, Cort. MERUK have given a lot of money to Julia Newton over the years (who got a grant): http://www.meresearch.org.uk/mrcaward.html .

But a lot of MERUK work is in Dundee in Scotland and you are right that nothing there got funding. (I have no idea if they submitted anything or not)

Tony Mach January 7, 2012 at 2:18 am

Oh, just in case people don’t know who “the Lights” are: I mean Kathleen and Alan Light, who have done an excellent gene expression study in CFS.

Reply

Cort January 7, 2012 at 2:30 pm

Thanks Tony! Two of our most promising researchers – who just this week published a study validating their prior study results and showing that the fatigue in ME/CFS is probably different from that which occurs in multiple sclerosis.

Reply

terry January 7, 2012 at 9:11 am

The money for reserch is welcomed however I don’t believe the UK medical establishment has changed. I don’t believe wolfs make good sheep. They give a little but are doggedly holding onto ME and will not be letting go soon.
It will be interesting to see the developments in Rituximab. Already experts in Britain are criticizing the research in Norway. It is noticeable they work in organizations dominated by psychiatric explanations for ME. They demand excellent world class research but don’t apply the same high standards and rigorous controls to their own flawed research into CBT and GET. Also lightning therapy promoted by Esther Crawley who advertises herself through the daily telegraph but not her treatment plans should be mentioned. Will there next move be to abandon the Pace trial and try to distance themselves from it in the hope that they will then regain respectability? . I am waiting for whatever junk the Esther Crawley Simon wessely kings collage London camp cook up to try to stop Rituximab and it will be interesting to see the new unknown psychiatrist or ME expert from the UK Australia abroad or from wherever they can get to pore cold water on rituximab and stop any further research into ME CFS.

Reply

Cort January 7, 2012 at 2:28 pm

One round of research does not a trend make but this round is encouraging. If they keep the membership of the CFS/ME Advisors group intact I imagine we will see more of this in the future.

Reply

Kathy D. January 7, 2012 at 7:59 pm

If only, if only these researchers could share information and learn from each other and make progress instead of going back to the Middle Ages and the use of leeches and bloodletting. It’s like throwing people in a pond and saying they’re guilty or innocent based on who drowns.
Where is science in all this muck?
There are researchers here, in Norway, Australia, many countries studying the scientific basis of this disease and its symptoms, trying to find causes and biomarkers. The Darth Vaders in this field should stand back and let scientists, researchers, medical doctors figure this out. And they should actually study the findings from the Lights, Drs. Komaroff and Klimas, Fluge and Mella, etc. Wouldn’t that be novel?
I suppose the “world is flat” society still exists, even though scientists centuries ago proved that is not the case. It’s the 21st century, with rockets to the moon, high-tech computers which can figure out so much, for instance with the human genome, and amazing communications technology — let’s apply that science to this disease. Yow!
And I’m glad to see the Lights have confirmed their study. Happy New Year to them!

Reply

Kathy D. January 7, 2012 at 8:03 pm

P.S. The Lights at University of Utah have found that genetic expressions in four genes changed after CFS sufferers did exercise, which did not happen with healthy controls.
Dr. Anthony Komaroff at Harvard Medical School has found, using spectral EEG’s, changes in brain matter in people with CFS, after exercise and sleep deprivation.
Some of us could not do these tests. I, for one, couldn’t do any exercise after sleep deprivation, many are in worse conditions. But I say “Thanks” to these researchers. Whatever is learned from these studies are a contribution to finding the missing pieces of the jigsaw puzzle that is CFS.
Now if a way to study the sickest people, who are homebound, could be found.

Reply

polly January 8, 2012 at 5:28 am

ripped off yet again
The UK government despises people with ME/CFS . People are denied benefits , denied care that they need and portrayed in the press as either lunatics brandishing knives and sending death threats to scientists or lazy bone idle gits who all they need is a kick up the backside to get them back to work .

This money was supposed to be ringfenced for biomedical research into ME so why is some of it going to Sjögren syndrome ? thats not chronic fatigue syndrome and it certainly isnt ME .

why is some of the money going to psychologists ? I thought this was for biomedical research ?

The only study to be honest which I have any faith in is Julia Newton .

There is nothing here that is going to find a cause for ME . This money was supposed to be for that reason I really do feel we have been well and truly ripped off yet again .

We need to be looking at causation not single symptoms like sleep which to be honest someone with genuine ME would probably list way down on their symptom list . with pain , cognitive disfuntion , infections , muscle problems and control ranging far higher . We need to step away from ‘fATIGUE ‘ this illness is far more complicated than mereley being a bit tired . Having a good nights sleep makes bugger all difference to my other symptoms .

Do you realise the 1.6 million actually equates to £6.50 per head per person in the UK with ME/CFS . that equates to a meal at KFC or a ticket to the cinema for fit and healthy people . or you might get 3 loaves of bread and a bit of change left over or perhaps be able to buy a piece of meat for sunday dinner though way prices are going up the piece of meat may be out of price range now .

Thats what this money eqautes to . yet how much was wasted on the pace and fine trials . millions . The pace trial is seriously flawed and should be retracted . will it be will it hell . the fine trial was a flop . All that money millions wasted and were supposed to be grateful for £1.6 million that theyve managed to share out to include psychologists and an illness that isnt ME or CFS .

How can anyone seriously think this government is turning over a new leaf . We are at the bottom of the crap pile as per usual and will remain there until the NICE guidelines are changed , theres research looking at the whole disease and causation , people are awarded the help and benefits they so deserve , the press starts reporting on ME fairly without bias and the likes of wessely and chalder are as far away from ME/CFS research as possible .

Reply

Cort January 18, 2012 at 8:55 am

Well its not all going to Sjogrens and it’s not all going to pscyhologists and there are many psychologists who are interested in the body/mind connection rather than the mind/body connection. I would be very careful about assuming that because someone is a psychologist they are necessarily interested in the ME/CFS as a behavioral disroder. In the MRC study the IFN-a study is examining how an immune factor effects fatigue and so on; so the researcher is taking an immunological approach to ME/CFS. If someone with a different label was attached to their name did this study – I think you might like it better.

Its not a ground-breaking series of studies (and it wasn’t represented that way) and much more work needs to be done – no doubt about that – but if you look at the past studies they’ve funded it is a new and more welcome direction from the MRC.

Reply

Tony Mach January 17, 2012 at 3:03 am

Cort, why can people deny HIV in the forum, and continue to do so, and I get suspended for calling BS what it is: BS?

Reply

Tony Mach January 17, 2012 at 3:50 am

Either you censor all, or you censor none.

Reply

Cort January 18, 2012 at 8:58 am

I don’t know the particulars of what happened Tony but we do not support wild conspiracy theories in the Forums and I agree that theories that HIV does not exist should not be part of the Forums.

Reply

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