Update on progress

December 1st 2015 –  We have been invited back to speak at the Fourth Annual Conference ” NATIONAL PROMs SUMMIT” in Birmingham.  Dan Wellings, Director of Insight and Feedback NHS England will also be speaking at the conference

November 7th 2015 – We will be at the Linacre Centre in Liverpool from 12.30 -14.00 collecting fingerprints

August 2015 – We held a ‘fingerprint party’ (!!) in Chester to encourage healthy controls to come and give their fingerprints (encouraged by the reward of a glass of wine and some nibbles). A lot of fun was had by all (except our fingerprint expert who worked very hard!)  We now have 35 sets of fingerprints from controls.

March 2014 – Professor Nick Black ( Professor of Health Services Research, Chair -National Advisory Group on Clinical Audit and Enquiries NHS England)
communicated with us regarding an official report on the use of PROMs within the NHS ” we should include mention of the use of PROMs to validate illnesses whose nature is contested. We will therefore include a brief mention in our background account of the diverse uses and benefits of PROMs, citing ME as an example. Thanks for alerting us to this otherwise neglected use of PROMs.”

December 3rd 2014 We have been invited to present our ideas about PROMs (Patient Recorded Outcome Measures ) for ME at the Third Annual Conference “NATIONAL PROMs SUMMIT” in London.  Professor Nick Black ( Professor of Health Services Research, Chair -National Advisory Group on Clinical Audit and Enquiries NHS England) is chairing this conference.

November 18th &19th 2013 –  We are talking on stage at Health 2.0 Europe to encourage interest in this diagnostic/management tool. Tim Kelsey National Director for Patients and Information NHS  and Geraint Lewis Chief Data Officer NHS will also be speaking.

November 2013 – Together with some NHS consultants, we are investigating various funding options to help patients use this site. This may be wristbands to record temperature and activity and apps where you can record your symptoms/ Bell’s with the quick press of a button. We are also looking into a device to capture the deterioration in fingerprints .Watch this space!

October 2013Nigel Davies, Head of Cheshire Fingerprint Bureau, has agreed to work with us to classify and score the degeneration found in the fingerprints of pwME. He has 34 years experience, has travelled extensively training people in fingerprints and is frequently called to court as an expert in fingerprints

August 2013 – Chester MESH is awarded a lottery ‘Awards for All’ grant to enable them to develop this website

Findings so far – updated 9th November 2015

We have 90 people contributing to the online database. 40 people have given us readings offline.  Half of the total contributors are people with ME, half are controls ( some with other conditions, some sedentary, some active)

Fingerprints 

We have a total of 70 people who have had their fingerprints taken by Nigel Davies (Many more have given their prints but for the sake of continuity, we are only including ones taken by the expert for now). 35 people with ME and 35 controls (some with other conditions, some sedentary, some active) and Nigel Davies is scoring all the fingerprints as we type. We need more people with ME in the 18- 40 age group. If you live near Chester, please contact us.

 

An extreme example of the deterioration of fingerprints in people with ME

An extreme example of the deterioration of fingerprints in people with ME

Tilt Test

We have nearly 200 readings inputted online and 100 offline.  Approximately half are people with ME.  No controls scored any points on the tilt test . The average increase in heart rate on standing for a control was 10 bpm and never exceeded 24 bpm . Approximately 60% of people with ME had a similar increase. Of the other 40%, the heart rate increased by 27 to 65 in line with how they were feeling at the time ( and fluctuated on an hour by hour basis). When they were least symptomatic it went up by 27-30 bpm, and at their worst, it went up by 65 bpm.

Body Temperature

It is proving difficult for us to collect data for this one as you need to remember to take and record your temperature 4 times a day. Nevertheless we have a total of 242 days of temperature charts inputted online and 60 days offline. 50 of those readings are from controls. Before reaching any conclusions, we need more controls. But we can tentatively say that a control’s body temperature is far less erratic than a person with ME

CLICK ON IMAGE TO ENLARGE

A typical 5 day temperature chart for a control

Temperature chart

A typical 8 day temperature chart for a person with ME

If you would like to contact us with ideas or suggestions, please use the form on our contact page.