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

Posted by Cort Johnson

MRC1The 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

QuestionMark1This 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.


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