Invest in ME Newsletter - January 2013

(available in pdf form here)

Invest in ME Newsletter


Welcome to Invest in ME's January 2013 newsletter

published 20/1/2013

8th Invest in ME International ME Conference 2013
News from Simmaron
NIH State of Knowledge Report
Let's Do It For ME
2013 Calendar Offer
Useful Web Sites for ME Patients
Parliament Debate on ATOS
Call For Trials To Be Reported
Flow Cytometer Appeal
Magical Medicine
Fallout From The PACE Trial
ME Webinar
Norwegian Research into ME
Human Enteroviruses
Apligen Fails to Gain Approval
New Articles

IIMEC8 - Mainstreaming ME Research


Registration is now open to our 8th International ME Conference in London on Friday 31 May 2013.

The theme around the 8th annual Invest in ME International ME Conference 2013 is Mainstreaming of ME Research - reflecting our view that research into ME has become a major area to be considered by anyone wishing to perform at the forefront of medical research need look no further than ME.

Research into Myalgic Encephalomyelitis - specifically biomedical research into ME – has been receiving increasingly more attention from both major research institutes in several countries as well as national health organisations.

The IIMEC8 conference theme focuses on infections and immunity and gives a platform to the latest initiatives occurring at present in ME research.

The Medical Research Council (MRC) in the UK, the Food & Drug Administration and Centres for Disease Control and Prevention in USA have created initiatives for new biomedical research into ME.

In Norway the Norwegian Health Directorate have allocated funding for biomedical research into ME following the 2011 double blind randomised clinical trial using Rituximab (Anti-CD20 monoclonal antibody) by Fluge et al (PLoS 6:10.Oct 2011) to successfully treat ME patients.

There is increasing research evidence of immune dysfunction in ME patients.

The UK MRC states -

“There is now preliminary evidence supporting the view that inflammatory mechanisms in the brain and spinal cord may underlie the pathophysiology of some severe disease CFS/ME phenotypes. Biobanks are now becoming available and create a unique opportunity for interrogation.”

We are pleased to once again be able to showcase developments around major existing projects such as the above mentioned clinical trial using monoclonal antibody, rituximab, to treat ME patients (Haukeland University Hospital, Bergen, Norway) , advances in immunology (Griffith University, Queensland, Australia) and pathogen discovery and pathogenesis (CFI,USA) and The Open Medicine Institute initiative OMI MERIT.

The charity is also planning on holding a researchers meeting the day before the main conference to encourage collaborations and the sharing of ideas and of knowledge.

ME is finally starting to become part of mainstream medicine with world class researchers taking an interest in this complex but exciting area of research.

Details of our speakers are available here - click here.

The main focus of Invest in ME since our 2007 conference has been to improve education and raise awareness of ME and lobby for a sound strategy of biomedical research into this disease. We believe the efforts of those sharing these views is finally having an effect.

To this end our 2013 conference focuses on the initiatives and research which are underway to find the cause of this disease and biomarkers to ensure that GPs will have it easier in future.

A conference leaflet is available to download click here along with other conference documentation.

More information about the conference will be provided on our conference pages - click here.

Previous conference information and reviews and DVD options are available at this link - click here.

Newslet link


News from Simmaron


Simmaron have now completed raising all the funds for their Australian spinal fluid study to allow a groundbreaking pilot study to begin. This will also unlock follow-on funding for their collaborators, the Marshall–Gradisnik group at Griffith University.

NIH State of Knowledge Report Document from 2011 published

Newslet link


NIH State of Knowledge Report


The NIH State of Knowledge Report Document from 2011 was recently published. It provides a good summary of the state of play regarding ME research up until 2011.

The report is here -

Newslet link



In Norway the Norwegian ME Asssociation and The ME and You Foundation are raising funds toward a large scale rituximab trial by Drs Mella and Fluge. The Norwegian Health Directorate has already allocated some funding for this research but donations from the public can help make things happen quicker. 9 million NKr is required. More details - click here.

Many people spend vast sums of money on unproven treatments for ME, often without any improvement being gained. This is entirely understandable but the only way to get treatments that help everyone safely via public health services is to get clinical trials performed. Biomedical research into of ME leads to better patient care and better doctor patient relationships.

Funding will usually follow discoveries but it is important that charities keep raising funds for strategic initial projects and encourage researchers to stay in this field.

The Let’s Do It For ME campaign which is raising funds for research to be initiated at the University of East Anglia (UEA) as part of setting up a centre of excellence has been very successful and has now raised over £75,000 toward the first target of £100 000 for the foundation project.

We continue the work on initiating other trials also.

Newslet link





Still some calendars available - at the lower price of £3.00.
We shall be adding some to the GP packs we are sending out also.
These can be ordered here - click here.



HoC Debate on ATOS Assessments

On 17 January 2013 there was a debate relating to Atos Work Capability Assessments initiated by Mr Michael Meacher MP. The transcript of this debate can be found here -

or one can watch the recording of the debate here -

The situation regarding ME patients and benefits was highlighted by several MPs among them the chair of APPG on ME, Annete Brooke MP.

For those going through benefit form filling, work capability assessments or an appeals process here are some useful websites:


DWP information on CFS/ME


“For the purpose of DLA, however, the current law means that a claimant cannot be eligible for a higher rate of mobility unless his/her disability is considered "physical". For this purpose, CFS/ME is "physical".



Benefits and Work [

Lots of free advice but to gain access for all of the advice one needs to join. A subscription to Benefits and Work costs £19.45 for a full year



Case Law Summaries regarding benefits by Disabilty Rights UK



Disability Law Service



Citizens Advice Bureau (CAB)



DIAL Network


7 Pseudo-Living blogspot Well written summary of all necessary information relating to claiming ESA.


Newslet link


Call For Trials to be Reported


Sense about Science campaign to have All Trials registered/All trials reported 

“It’s time all clinical trial results are reported. Patients, researchers, doctors and regulators everywhere in the world will benefit from publication of clinical trial results. Please sign the petition: Thousands of clinical trials have not reported their results; some have not even been registered. Information on what was done and what was found in these trials could be lost forever to doctors and researchers, leading to bad treatment decisions, missed opportunities for good medicine, and trials being repeated unnecessarily on people and animals. All trials past and present should be registered, and the full methods and the results reported. We call on governments, regulators and research bodies to implement measures to achieve this.”

We hope that this applies to the recovery rates from the PACE trial also?

Fifty-three clinical trial participants have written to the European Medicines Agency raising their concerns, amongst them was Mr Ralph Cantellow who participated in the PACE trial.

As we know the PACE trial research group has not published the recovery rates and have stated that they intend not to do so in their reply to a Freedom of Information query. []

“The information you have requested is not held. The requested data
relating to the recovery rates and positive outcomes do not exist. That is
to say that such analyses have not been done and there is no intention to
do so. The reason for this is that the analysis strategy has changed from
the original protocol as described below.”

This is flagrant violation of all that is correct and proper with research - especially one costing over £5 million.

Newslet link

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