Chronic Fatigue Syndrome &
Myalgic Encephalomyelitis

LATEST CFS/ME NEWS

September 2011

CFS/ME & Fibromyalgia Survey

Phd student, Pamela McKay, who is a staff nurse working at a hospital in Inverness, is currently working on a study with the University of the West of Scotland.

The study has secured ethical approval from the University and Pamela McKay has been awarded a scholarship by the Florence Nightingale Foundation in support of her work. Its main aim is to explore and analyse similarities between symptoms associated with ME/CFS and FM. She hopes this will help "to establish an in-depth understanding of the impact these symptoms have on patients."

The study involves logging on to Pamela McKay's website, creating a user account and then answering questions relating to the symptoms experienced.

If you would be interested in participating visit: www.cfsmefibromy.co.uk
Or email Pamela McKay: email:cfsmefibromy.study@gmail.com

September 2011

Lyme CFS Online Survey

The Department of Health (DOH), through the James Lind Alliance (JLA), is answering questions on uncertainties relating to Lyme disease.

As many may be aware, Lyme disease is increasing in incidence across the UK but there appears to be a lack of awareness of this condition in many health care settings. Both patients and clinicians are subjected to differing opinions on its diagnosis and management.

This enquiry could also be of relevance to some chronic fatigue sufferers because it is unknown how many of these people may have Lyme disease.
The JLA Lyme disease Priority Setting Partnership is working to identify the most important research questions for diagnosis and treatment of Lyme disease.

Access the survey and details at:
www.LymeDiseaseAction.org.uk/jla

You can download a paper copy or complete the survey online. Both patients and a wide range of clinicians are being asked to contribute. (Please pass this information to both colleagues and patients.)

The closing of the survey has been extended to the end of October 2011.

August 2011

New universally standardised CFS/ME Criteria

A new, precise set of criteria for Myalgic encephalomyelitis (ME) was published in the October edition of the Journal of Internal Medicine. The new criteria, Myalgic Encephalomyelitis: International Consensus Criteria (ICC), can be seen here: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/pdf

A key goal of the ICC are to help researchers to study homogeneous patient sets. They are also an important diagnostic tool for clinicians.

The European Society for ME (ESME) encourages researchers, doctors, government agencies, patient groups, etc. to do their part to make this happen by using the ICC exclusively.

They recommend that:

• Researchers use the ICC exclusively and call the disease ME in all written documents about their research.
• Government agencies/foundations give research grants to scientists using the ICC.
  Government agencies/institutions officially adopt the ICC and post them on official websites.
• Doctors use the ICC to diagnose patients and write only ME G93.3 in patient journals or in all written documents about these patients.
• Advocates/patient associations speak with one voice by agreeing to call the disease ME.

March 2010

Comments on PACE trial published in the Lancet on Feb 2011

by Dr Christabelle Yeoh

A study has just been published in the Lancet about the effectiveness of cognitive behavioural therapy (CBT), graded exercise therapy (GET) and adaptive pacing therapy (APT). Presently, the guidance on treatment of chronic fatigue syndrome (CFS) is with GET and CBT, together with supportive management of symptoms. This study was carried out as there have been concerns raised by patient organisations that GET and CBT may be causing more harm than good.

The paper acknowledges that the prognosis of CFS is poor if left untreated. The selection criteria for this study excluded patients who were unable to attend the hospital for appointments and who had chronic fatigue as defined by the Oxford criteria. This criteria requires fatigue to be the main symptom, excludes other medical diagnosis (from routine blood tests, as listed in the NCE guidelines) and an absence of psychiatric disorders.

The overall finding was that participants had less fatigue and better physical function after having CBT and GET than when they did only APT or only had specialist medical care alone (SMC). SMC provided mainly supportive pharmacotherapy for symptoms (sleep, pain and mood) and for general advice. Particpants with non-serious adverse events were 96% with APT, 89% with CBT and 93% with GET. Non-serious events were anything that did not include death, hospital admission, increased severe and persistent disability, self-harm or life threatening. There were serious events in 9% of the APT group, 4% in the CBT group, 8% in the GET group and 4% in the SMC alone group. No quantification was made for the quality of life severity of symptoms. The walking test responded most to GET and depression responded most to CBT.

According to the authors, the main difference between APT is that this encourages adaptation to the illness, whereas GET and CBT encourage gradual increases in activity with the aim of getting over the illness. The authors say the results obtained in this study do not support pacing, in the form of APT, as first line therapy for chronic fatigue syndrome.

At Breakspear Medical Group, we would support this finding, as this has always been our experience. We do not advise that patients have to adapt to ill health and accept the physical limitation without questioning underlying causes for the condition. We recognise that there is delayed recovery from exertional fatigue, which must not be ignored, but this is different in principle to using pacing as an actual treatment for fatigue. We are also supportive of cognitive behavioural therapies which address unhelpful cognitions, establish a sleep pattern, structure daily activity and support emotions through the illness. This, together with physical therapy, are important aspects of treatment of chronic fatigue whilst we address underlying metabolic, immunologic and neurological problems that are so prevalent in chronic fatigue.

Another comment on this study is that patients who were unable to attend the hospital for assessment were excluded from the study. Hence, it is likely that the most severe group of CFS patients have not been assessed in this regard. It may be that this group would have fared poorly with GET and CBT and need much more rigorous medical investigation and treatment. We also note that in this study, there were high numbers of people with non-serious adverse events. This details were not specified but it may be that this could be avoided if the patients also had physiological support using more natural means, as those routinely provided by Breakspear Medical Group, namely environmental and nutritional advice. All the patients in this study already had care from specialist medical personnel covering pharmaceutical management of symptoms.

Results from this study also show a serious deterioration occurs in 6-9% of all the patient groups having CBT, APT, GET and SMC. It is clear that therapies for chronic fatigue syndrome should not be focused soley within the remit of rehabilitation and pschological medicine, as is mostly the case at the present time. This is why we fully support the MRC CFS/ME research prioritisation meeting outcome.

March 2010

MRC Research plans for CFS in the UK

by Dr Christabelle Yeoh

In June 2010, doctors and researchers met in the Medical Research Council
to discuss what was needed in the United Kingdom to advance this area of
medicine. The following outcomes were agreed:

1. CFS/ME is a real, serious and debilitating medical condition, and that
research into all aspects of CFS/ME is needed.

2. Cross disciplinary research that explores the central biological
questions of relevance to CFS/ME should be actively encouraged. While
acknowledging the challenges in CFS/ME, such as difficulties with diagnosis
and collecting early onset patient data, the scientific community is well
placed to investigate the pathways and symptoms that are common to CFS/ME and other conditions. Experts in the field of pain, fatigue, autonomic
dysfunction, cognitive symptoms, sleep disorders and infections and altered
immune function would be welcome to submit collaborative proposal to explore these issues in CFS/ME and associated disorders / areas of research that could bring important information to bear on CFS/ME.

3. Short tem goals for research would address underlying mechanisms
underlying chronic changes through the study of cross-disease symptomatology and pathways in the clinic and/ or lab :

• autonomic dysfunction
• cognitive symptoms
• fatigue
• immune dysregulation (eg through viral infection)
• pain
• sleep disorders