MERUK: Severely affected ME/CFS patients – a geographically defined study

[Firestormm]

ME Research UK

"To mark the end of International ME Awareness week 2014, we’re announcing a newly funded project – on a subject very close to our hearts."

Severely affected ME/CFS patients – a geographically defined study

17 May 2014

Background and aim
Around 10 to 25% of ME/CFS patients are reported to be housebound or bedbound, yet we still understand very little about the origin and outcome of their severe illness. We know, however, that severe illness predisposes patients to secondary medical conditions; that the prospects for recovery tend to be worse for those most severely affected; and that the cumulative impact of severe illness over many years, where there is no sense of improvement, can be profound. Because of all this, it is astonishing that the most basic clinical and experimental scientific work has not been carried out on this important subgroup of people with ME/CFS (discussed more fully in our essay, Severely Overlooked by Science)....

For many years, ME Research UK and Prof Newton have been concerned about the chronic lack of research interest into severe ME/CFS, and the serious void that exists in the scientific knowledge-base about this group of patients. So, when ME Research UK awarded a large programme grant to the researchers in Newcastle in 2014 (photo), it was decided to initiate a specific project investigating housebound or bedbound individuals who are unable to attend clinics or take part in research projects (which often require hospital attendance and multiple visits).

The two-year project will be conducted day-to-day by the newly funded ME Research UK Research Associate, and will involve:

1. Identification of severely affected ME/CFS patients from records of the Newcastle Clinical Service, local patient support groups including ME North East, and national registers or other sources. This will give an indication of how common severe ME/CFS is in this particular area of North-East England, and identify specific patients to be included in the investigation.
2. Home visits on patients. During each visit, the ME Research UK Research Associate will undertake a series of specific assessments, including:
   • Recording of demographic information, such as length of illness, mode of onset, provision of social care, receipt of benefits etc.
   • Autonomic testing at rest to gauge the presence of autonomic nervous system dysfunction, which features prominently in ME/CFS patients generally.
   • ME and CFS diagnostic criteria assessment, using the DePaul Symptom Questionnaire in collaboration with Prof. Leonard Jason at De Paul University in Chicago.
   • Neurocognitive testing (e.g. memory, concentration and executive function) using software-based tools, since neurocognitive symptoms are some of the most common and worrying for ME/CFS patients.
   • Assessments of muscle strength, using dynamometer and manual physical techniques.
   • Activity monitoring using a 24-hour actimeter.
   • Asessment of symptoms, including information from sleep and activity diaries.
   • Recording of patients’ own experience of illness and treatment, and the impact of the disease.

This aim of this exploratory study is to raise the curtain on this severely overlooked group of patients, defining their clinical characteristics, gauging the level of unmet clinical need, and determining the relationship, if any, between autonomic nervous system dysfunction and other clinical variables. Subsequent progress will depend on what these investigations uncover and where the science leads. Crucially, however, a start will have been made on the serious scientific investigation of housebound and bedbound people with ME/CFS.

Read more: http://www.meresearch.org.uk/our-research/ongoing-studies/severely-affected-me-patients/

Be interested to learn how many are in the study, and how much it will cost if anyone can find out

 

[alex3619]

I was reading their Severely Overlooked by Science essay, and I think there are problems with it. Those problems appear to be more about how existing research is conceptualized than about future research. Mostly it has to do with interpretation of data from things like the FINE trial. Subjective data is being taken as the same level of evidence as objective data.

 

[Little Bluestem]

I wonder it the muscle strength test should be a two day one.

 

[alex3619]

I wonder it the muscle strength test should be a two day one.

I think it should be, and so should cognitive testing, until and if we learn otherwise.

 

[Min]

I tentatively welcome this, having supported MERUK's excellent work over the years. The severely affected have so far only been included in the farcical FINE trial in UK research.

It is concerning to some that MERUK have joined the CFS/ME Collaborative that includes Prof of Psychiatry Peter White of the PACE trial, Dr Esther Crawley of the SMILE trial of the Lightning Process on children, and AfME, also involved in PACE.

I do hope researchers will look for persistent pathogens in the severely affected in the near future.