First biomedical research in chilren with CFS, FM.... 'biomarkers?'

First biomedical research in children with M.E. -

A groundbreaking study of biochemical markers in the blood of children with ME.

This comes from across the pond thru Co-cure:

http://listserv.nodak.edu/scripts/wa.exe?A2=ind0501b&L=co-cure&F=&S=&P=1912 Posted below

grannycfs 1-11-05

Hi Granny - I'm surprised to see that the research came from the UK. It usually seems that anything I read that comes from there regarding ME/CFS is usually along the psychiatric lines. I'm glad to see that someone is actually treating this as a serious physical disorder, and researching it as such. Bernie

I think they are on to something here

There is also good research in the UK for their gulf war vets that one 'Seabee' shared with me. He said he learned more info on the blood by attending a CFS meeting. I'll look up what he sent me & post it here, too

Mother Margaret,

Damage to the red blood cells has been a subject of research for some time. Many years ago Les Simpson (then in the process of retiring from the University of Otago, Dunedin, New Zealand) called for Vets to donate blood samples to his investigation. His comments were that my wife (CFS/ME) had grossly misshapen red blood cells, and that mine were well towards the bottom of the 'acceptable' range. His explanation was that if the (normally) do-/dough-nut (torus - I think, is the technical word) shaped red blood cells became 'squashed' or misshapen in any way then they lose the capability to convey oxygen around the body (their raison d'etre), and hence the fatigue.

A Dr Bell (apologies, cannot remember affiliation, speaking to the CFS Soc in New Zealand/Auckland Medical School some five years ago) told us that he intended to start research in the belief (with a statistically insignificant/small number of subjects) that CFS patients ended up with a catastrophically-low volume of oxygen-carrying red blood cells - so low that the only others he had come across with such levels were trauma patients, eg heavy blood loss and shock after a motor-traffic accident; and once the numbers dropped that far, life expectancy went with them -

thus begging the question, how do CFS patients manage to survive the
blood-drop (presumably over time) and thereafter to carry on 'living'?

It would be interesting to hear more about the blood-tests which have
been developed to detect 2-butoxyethanol damage. Please keep us
current with any further blood/cell shape research you may come across."

Regards,
=dn "David Neil" <SeaBee@dande.homechoice.co.uk>, email no longer works

Check this thread for comments before and after his

Margaret 1-25-05 More on red blood cells

Another resource? shared by grannycfs

A link to read a report on Dr. Hyde's talk at the conference - he is one of the foremost leaders in the clinical treatment of ME/CFS and wrote a textbook about 10 years ago on it. He has the Nightingale website in Canada. It was fascinating reading:

www.phoenix-cfs.org/AACFS04Hyde.htm

The Phoenix site is hard to get around in but here's a link to the page with links to all the reports they list:

www.phoenix-cfs.org/ConferenceReports.htm

[Thanks to Jane Colby of the Tymes Trust for this.]

PUBLIC ANNOUNCEMENT: MAY BE REPOSTED BUT ONLY IN ITS ENTIRETY

FIRST BIOMEDICAL RESEARCH IN CHILDREN WITH M.E. - A GROUNDBREAKING STUDY OF BIOCHEMICAL MARKERS IN THE BLOOD OF CHILDREN WITH ME

* Children with ME may have signs of a chronic inflammatory disorder. * ME could result from a continuing challenge to the immune system, such as a persistent viral infection. * Study findings could become the basis for future treatment interventions.

Three years ago on 11 January, the Report of the Chief Medical Officer's Working Group on CFS/ME stated that research in children with ME was an urgent priority. This is the first biomedical study in children.

Two ME charities, MERGE and The Young ME Sufferers Trust are delighted to announce a unique study into biochemical markers in children with ME. The investigation will be based in the Vascular Diseases Research Unit at the University of Dundee. Funding for this study has been provided by MERGE (the ME Research Group) and The Young ME Sufferers Trust (the Tymes Trust) in conjunction with the Scottish charity 'Search ME'.

ME and CHILDREN

ME (also called ME/CFS) is a disabling condition of unproven cause affecting all age groups, but it represents a substantial and widespread problem in the young. Estimates vary but there are probably around 20,000 children with ME in the UK alone, yet some doctors still refuse to recognize the problem, let alone investigate it. Attitudes are changing, however, and in a recent report, the UK Chief Medical Officer highlighted the fact that research in children with ME was an urgent priority.

The scientific study of ME in adults is sparse given the extent of the problem, but in terms of children it is almost non-existent. MERGE and The Young ME Sufferers Trust believe that work in this area is crucial, as studies suggest that ME is the commonest cause of long-term sickness absence from school in previously fit children.

THE STUDY

Title: An Investigation into Biochemical and Blood Flow Aspects of ME/CFS in Children

Researchers: The study will be under the direction of Dr Gwen Kennedy (Research Fellow) and Professor Jill J F Belch (Professor of Vascular Medicine) at the Vascular Diseases Research Unit, University Department of Medicine, Ninewells Hospital Medical School, Dundee DD1 9SY. In the past 15 years, this research group has published more than 250 peer-reviewed scientific papers relating to inflammation and vascular disease, and over the past 4 years has been investigating ME/CFS in adults. The study on children is an extension of this work on adults.

Background and Aim: Previous work by these researchers, using sophisticated vascular imaging techniques, has shown biochemical abnormalities in the circulation of adult ME patients, suggesting that ME might result from a continuing challenge to the immune system, such as a persistent viral infection.

The aim of the newly-funded study is to investigate a group of children with well-defined ME/CFS (in whom there is the possibility of long-lasting chronic ill-health) to see - for the first time - if similar biochemical abnormalities exist as those already observed in adults with ME. If they do, children with ME/CFS may have signs of a chronic inflammatory disorder associated with increased risk factors for cardiovascular disease, but encouragingly, the findings might become the basis for future treatment interventions.

UNIQUE

This study is unique in that it is the first to investigate biomedical markers in children with CFS/ME and fits in well with the UK Chief Medical Officer's call in 2002 for further research in this field.

EXPERIMENTS

The study will recruit 25 children with well-defined ME/CFS along with 25 age- and gender-matched 'control' children. Each child will have a) A medical examination; b) Blood tests consisting of a standard full blood count, measurements of oxidative stress (eg oxLDL and plasma isoprostanes in the blood), cholesterol measurements (HDL, LDL & trigclycerides); C-reactive protein (an indicator of inflammation will be measured by a high sensitivity ELISA) and apoptosis measurements. In addition, blood flow responses to acetylcholine will be measured using a scanning laser Doppler imager.

TIMESCALE

Recruitment for the study will begin in the Spring of 2005, and results should be available about 18 months afterwards. ---------------------------------------------------------------------------- Charity details: MERGE www.meresearch.org.uk/index.html The Gateway, North Methven St, Perth PH1 5PP

The Young ME Sufferers Trust (Tymes Trust) www.tymestrust.org PO Box 4347, Stock, Ingatestone, Essex, CM4 9TE Tel/Fax : 01245 401080

ENDS

Research on blood of Children with ME, CFS