Category Archives: ME/CFS

Diagnosing ME/CFS – further research

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.

Aim

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

METHODS

Recruitment

100 participants will take part in the study which will consist of CFS/ME patients and healthy controls.

Groupings

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:

RECRUITMENT

Recruitment and Research of ME/CFS research

RESEARCH COMPLETED AND RESULTS PUBLISHED

 

Timetable

 

January 2013                                                           Recruitment of research assistant,

NHS physician and osteopath.

 

May 2013                                                                 Begin recruitment of volunteers and proceed with

diagnostic instruments.

 

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.

 

 Costs

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.

 

 

Reflection on a Life taken by CFS

Inquest implicates CFS in death

A couple of weeks ago I was upset to read of the death of Lois Owen at the age of 34 from Chronic Fatigue Syndrome (CFS), but I was able to take something away something that possibly could be seen as a slight ray of sunshine.

A report of the inquest into her death published in the Derby Telegraph illustrates that CFS far from being an excuse for lazy people to drop out. Here was a young woman who while she had CFS went to University and graduated with a first class degree (Do you have any idea how hard that is). She wrote a book and also set up her own business. Does this sound like a lazy person. I don’t think so.

Her family and  health care team took her illness seriously. Rather that CBT and GET which a great number of people with CFS have found to be ineffective, they recommended rest. While recent (poor) research doesn’t agree with rest  or pacing a lot of people in my experience find this to be the best way of managing their illness. The benefit of pacing is seen in a survey carried out by the ME association. (pages 8,9,10 make interesting reading)

The Ray of sunshine I was speaking about. Well that is bitter-sweet, but one of the causes of her death was listed as CFS. I hope that now it is further acknowledged that CFS has the potential to kill, or at least is seen as something that can contribute towards someones death.

I also hope that politicians, heath boards and health policy makers will start to take greater notice of the people with CFS and start lobbying for and finding money for research into a diagnosis and treatment for this debilitating disease.

Through twitter I’m going to pass this post  along with the inquest report to Scottish government ministers with a heath remit. Their details are below.

I’m going to start with

  • Nicola Sturgeon (@NicolaSturgeon) MSP, Deputy First Minister and Cabinet Secretary of Health and Wellbeing.
  • Michael Matheson (@MathesonMichael),MSP, Public Health Minister in the Scottish Government
  • Shona Robison (@ShonaRobison), MSP, Minister for Public Health

Why don’t you join me?

 

Please note

  1. I had reservations about publishing this, but after talking to more people with ME/CFS and hearing some of their stories I decided to.
  2. I have only referred to CFS (not ME or CFS/ME) as this is what’s in the inquest report.

 

 

The Perrin Technique

The Perrin Technique for ME/CFS

I’ve Ignored this part of the site too long time. Planning on a lot more content. I have some ideas for content, but I’d also like to know what would you like to read about. You can contact me with your suggestions by clicking here. Just use bullet points if you want.

This is to get you thinking

I have trouble Writing about ME/CFS. Everyone seems to have an opinion. Some are very vehment in defense of their diagnosis, view or treatment. That’s why I’m asking you what you’d like to read about.

First of all there’s the names ME/CFS, Myalgic Encephalomyelitis, Chronic Fatigue syndrome, NeuroME, CFIDS, Fibromyalgia. These are just the names I can quickly think of it’s endless.

Are these all the same condition?  Does it depend on who diagnoses it? What do you think about this?

 

Date written Thursday 26 April