Short Report
A Disease Register for ME/CFS : Report of a Pilot Study
Derek Pheby 
, Eliana Lacerda , Luis Nacul , Maria de Lourdes Drachler , Peter Campion , Amanda Howe , Fiona Poland , Monica Curran , Valerie Featherstone , Shagufta Fayyaz , Dikaios Sakellariou and Jose Carlos de Carvalho Leite
BMC Research Notes 2011, 4:139
Abstract (provisional)
Background
The ME/CFS Disease Register is one of six subprojects within the National ME/CFS Observatory, a research programme funded by the Big Lottery Fund and sponsored by Action for ME. A pilot study in East Anglia, East Yorkshire, and London aimed to address the problem of identifying representative groups of subjects for research, in order to be able to draw conclusions applicable to the whole ME/CFS population. While not aiming for comprehensive population coverage, this pilot register sought to recruit participants with ME/CFS in an unbiased way from a large population base. Those recruited are constituting a cohort for long-term follow-up to shed light on prognosis, and a sampling frame for other studies.
Findings
Patients with unidentified chronic fatigue were identified in GP databases using a READ-code based algorithm, and conformity to certain case definitions for ME/CFS determined. 29 practices, covering a population aged 18 to 64 of 143,153, participated. 510 patients with unexplained chronic fatigue were identified. 265 of these conformed to one or more case definitions. 216 were invited to join the register; 160 agreed. 96.9% of participants conformed to the CDC 1994 (Fukuda) definition; the Canadian definition defined more precisely a subset of these. The addition of an epidemiological case definition increased case ascertainment by approximately 4%. A small-scale study in a specialist referral service in East Anglia was also undertaken. There was little difference in pattern of conformity to case definitions, age or sex among disease register participants compared with subjects in a parallel epidemiological study who declined to participate. One-year follow-up of 50 subjects showed little change in pain or fatigue scores. There were some changes in conformity to case definitions.
Conclusions
Objective evaluation indicated that the aim of recruiting participants with ME/CFS to a Disease Register had been fulfilled, and confirmed the feasibility of our approach to case identification, data processing, transmission, storage, and analysis. Future developments should include expansion of the ME/CFS Register and its linkage to a tissue sample bank and post mortem tissue archive, to facilitate support for further research studies.
‘Future developments should include expansion of the ME/CFS Register and its linkage to a tissue sample bank and post mortem tissue archive, to facilitate support for further research studies.’
Is the ’tissue sample bank and post mortem tissue archive’ the one the MEA is involved with or heading?
And how does one obtain details of said facility in order to make arrangements for being a donor upon death?
Thanks.
The efforts of these people are completely dwarfed by the rapid progress being made on many fronts in the U.S.
This looks like another go it alone “Nimrod” project, when the more pragmatic thing to do would be to collaborate /invest in AWACS !
Firestorm: Yes – this important research project is now linked into our plans to set up a biobank for blood samples later this year.
Dionysus: Why are you always so disparaging about anything that is being done in the UK regarding research – especially if it is being funded by the MEA?
Dr. Shepherd, You are wrong.
I fully support any properly undertaken biomedical research done in the U.K. – in particular, ME Research UK have made a very valuable contribution to the body of evidence.
However, I fail to see how using up very limited funds in order to undertake this kind of desktop research exercise is a sensible priority at this stage.
I wouldn’t object to this kind of long term approach, if at the same time, the key biomedical research opportunities (which might provide a shortcut in whole process) were being funded adequately in the short term.
Was this particular study funded by the MEA ? – the article doesn’t say so.
Perhaps you and I simply fundamentally disagree on what should be the current research priorities …… but then you’ve already declared XMRV to be a dead end haven’t you ?
Dear Dionysus,
Like you, I am fed up to the back teeth with this dreadful illness and I have developed a somewhat jaundiced outlook. However, there’s a difference between being despondent and being unfailingly negative.
There are good people out there working hard on our behalf; we may not be impressed by their efforts but we can at least be grateful. When we are impressed, let’s say so; otherwise silence is the less damaging option.
The ME Observatory is (at worst) doing no harm while at best it is gathering hard facts and figures about the situation in the UK; that can only be a good thing. Such data can be used to strengthen our case for benefiting from developments in the USA, which are very impressive – but we can’t afford them. (More power to the MEA and IiME)
Thank you, Derek Pheby, et al.
Thank you, Dr Shepherd.
Thank you, IiME.
The latest Lombardi et al paper: “Xenotropic Murine Leukemia Virus-related Virus-associated Chronic Fatigue Syndrome Reveals a Distinct Inflammatory Signature”.
Now that’s more like it !!!!
A conversation I had earlier today leads me to note that this research effort could usefully be extended into finding those people who have actually recovered from ME and exited from ‘the community’. ME statistics must be biased by the fact that those who recover do not get recorded, and just leave these forums and get on with their lives. So an effort needs to be made so that the big picture of the statistics of this disease encompassrs all from the bedbound to the fully recovered.