Research into the diagnosis of Myalgic Encephalomyelitis
A diagnosis of ME/CFS is usually made by exclusion. If you have been diagnosed with ME or CFS you know what this means. If you haven’t or you’re waiting for a ME diagnosis it can be extremely frustrating. This piece of research is important because it could potentially be key to getting The Perrin Technique and it’s “instant” diagnosis through the NHS
An earlier very small scale study was performed by Professor Basant Puri using part of the diagnostic procedure developed Raymond Perrin. This earlier showed very promising results. Dr Perrin is trying to take this research further.
Over the coming weeks I aim to break the outline for this planned research down into small easily understandable chunks. Below is Dr Perrins summary account of the research.
SUMMARY OF NEW RESEARCH PROJECT 2013
Examining the accuracy of a physical diagnostic technique For Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
The novel manual system of diagnosis being examined was developed in 1989 by the principal investigator Raymond Perrin. The diagnostic procedure used in this technique focuses on certain physical findings, namely specific tender points in the chest and abdomen, the presence of palpable varicose lymphatic vessels in the chest, restricted and posturally dysfunctional thoracic spine and a disturbed cranial rhythmic impulse (CRI).
Illness behaviour can be defined as relatively distinct but subtle behavior, posture, mannerism and/or responses which may happen in patients with long term health problem. If the presence of physical signs were demonstrated to be significant in CFS/ME then this will demonstrate that one can tell that somebody has CFS/ME not only by observing obvious illness behaviour.
Following the first oral hearing on Tuesday 18th April 2006 of the Gibson Enquiry at the House of Commons, it was generally concluded by those present that an earlier diagnosis would usually lead to a better prognosis when treating CFS/ME. The published report from the Gibson enquiry of Nov 2006, described The Perrin Technique as “a useful and empirical method which although unorthodox should not be dismissed as unscientific and that it required further research”. The most recent survey carried out at The University of Bristol in September 2011 claimed that CFS/ME affects up to 2.6 per cent of adults in Britain. A quicker diagnosis would thus reduce the huge financial burden placed on the health service by reducing the need of some of the specialist services used and the pathological tests carried out at present.
The new research will evaluate a major principle behind the Perrin technique which is the presence of specific physical signs in CFS/ME patients. The research study, is a practical method to confirm or refute this main principle of the Perrin technique. Subsequently, this should inform the Perrin practitioners, CFS/ME patients and general clinicians about the role this technique may or may not play in the management of CFS/ME patients.
The aim of this study is to explore if there is validity in the use of specific physical signs as an aid to diagnosing CFS/ME
100 participants will take part in the study which will consist of CFS/ME patients and healthy controls.
Group 1 will be around 50 volunteers who have been selected consecutively by the research assistant from a larger group who have been diagnosed by consultant in the NHS and confirmed as suffering from CFS/ME using an informal interview screening tool based on the NICE guidelines.
Group 2 will be around 50 healthy controls again selected consecutively from a larger group of volunteers by the research assistant and who have been matched for age and gender with the patient group and confirmed as not suffering from CFS/ME using an informal interview screening tool based on the NICE guidelines.
Health professionals involved the study
The examination of the participant using the Perrin Technique will be carried out by a trained chartered physiotherapist with a few years experience in this specific manual technique working with CFS/ME patients and the other a registered osteopath who has been recently trained in the manual technique specifically for this study with little or no prior experience of CFS/ME patients. Training of the osteopath in question should only take around two weeks working in The Perrin Clinic under the guidance of Dr Perrin. When the osteopath is having his/her training, he/she will only stay in the treatment room for Dr Perrin to demonstrate the physical signs and then leave to let Dr Perrin carry on with his consultation. This will be done to minimise the osteopath’s ability to use anything other than the Perrin signs to reach their final conclusions during the study. The third clinician involved in examining the participant will be a physician who will be selected due to a reasonable knowledge of CFS/ME and have had experience working in an NHS clinic for CFS/ME. They will not have had any experience regarding the physical aspects of the Perrin technique.
Examination of Participants
The participant will see all three practitioners on the same day. This will take place no later than 1 month of being accepted onto the study.
The examination of the participant by both the physiotherapist and osteopath will follow the same protocol as developed by Dr Perrin.The NHS physician will examine the participant using a standard clinical neurological and rheumatological examination.
The basic method of this project is represented in the flow chart below:
RESEARCH COMPLETED AND RESULTS PUBLISHED
January 2013 Recruitment of research assistant,
NHS physician and osteopath.
May 2013 Begin recruitment of volunteers and proceed with
December 2013 Complete recruitment of volunteers and diagnosis.
January 2014 – April 2014 Analysis and documentation of results.
May 2014 + Publish results and dissemination of findings through
relevant conferences and patient groups.
The costs of this research project have been calculated as being no more than £60,000 for the year and are being fully funded by the FORME Trust, Charity No 104 5005.