At the Sussex & Kent ME/CFS Society we are pleased that the PACE trial shows clearly that specialist Cognitive Behavioral Therapy (CBT) along with Graded Exercise Therapy (GET) can help a good number of people with mild or moderate ME/CFS make significant improvements. It is also reassuring that the trial confirms that these therapies can do no harm when applied by appropriately trained professionals that are experienced in dealing with the complexities of the condition.

We are surprised that the other management approach of Pacing did not also rate highly as an effective management strategy alongside medical care helping patients through their illness and towards some type of recovery. A recent survey that we ran across our region amongst people affected by ME/CFS showed that a massive 94% of those that had tried this approach found it of some help or very helpful. Out of the 457 respondents 74% of those that has tried CBT found it helpful and 63% said that GET had helped them.

The PACE trial shows that specialist CBT and GET are moderately effective and are designed to ease symptoms leading to marked improvements rather than being curative. We continue to call for more research to be carried out into the cause(s) of the illness(s) and other treatments that could help those with the condition including the housebound.

Those affected by Myalgic Encephalopathy or Chronic Fatigue Syndrome in Sussex and Kent have welcomed an announcement by the Medical Research Council(MRC) that it is committing £1.5m for research into the causes of the illness. The aim is to promote new and innovative partnerships between researchers already working in the ME field and those in associated areas, such as pain and fatigue. The aim is also to encourage and support more high-quality ME research proposals.

Colin Barton of the Sussex & Kent ME Society said: “This is indeed good news that should encourage more members of the medical and scientific community to take up the challenge presented by this complex illness that can ruin lives.”

Dr Esther Crawley gave an excellent illustrated talk on ME/CFS at a meeting on January 19th organised by the Brighton & Hove Primary Care Trust at Hove Town Hall. The Sussex & Kent ME/CFS Society’s chairman, Colin Barton and their paediatric advisor Dr Kamal Patel were there along with AYME’s Mary-Jane Willows. The presentation was well received by the ten PCT officers present who are responsible for directing the care of youngsters with long term illness in the area.

In October 2009 we published a statement about the research from the United States suggesting an association between a xenotropic murine-related retrovirus [XMRV] and CFS/ME. In that study by Lombardi et al 67% of 101 CFS/ME patients were found to have XMRV compared with 3.7% of controls. The report stimulated several other studies around the world to see if the findings could be replicated. One study appeared to confirm the association between XMRV and CFS/ME but on closer inspection it is apparent that the study identified a genetically diverse group of Murine Leukaemia Virus [MLV] related viruses distinct from XMRV. Five other studies have been published [2 from the UK, 1 from USA, 1 from Holland and 1 from China] which have found no evidence of an association between XMRV and CFS/ME in a total of 504 patients. Thus, although the initial report from the USA was interesting and potentially exciting, we still await its replication and at present we cannot recommend routine testing for XMRV in patients with CFS/ME.