Invest in ME Newsletter - December 2012

(available in pdf form here)

Invest in ME Newsletter

 

Welcome to Invest in ME's December 2012 newsletter

published 22/12/2012

IN THIS ISSUE
8th Invest in ME International ME Conference 2013
Informational Packs
Let's Do It For ME
2013 Calendar
SOBAFF Walk for IiME
EMEA Partition
IiME Ad for ME
ICC Guidelines
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 - 8th Invest in ME International ME Conference

 

The 8th annual Invest in ME biomedical research conference in London is scheduled for 31st May,  2013.
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.

 

 

Informational Packs for GPs, Healthcare Staff and Media

 

For some while IiME have had a GP pack available which we used to educate and inform GPs and other healthcare staff about ME. We have also used these in cases where patients have been at risk form ignorant medical knowledge and where IiME have needed to step in to help. 
We are now making available 25 packs to help in Scotland. 
These packs will be distributed to 25 locations in Scotland in order to raise awareness. 

Recent events in Scotland, where the cross party parliamentary group has been disbanded despite a majority (30 votes) supporting the group's work to progress ME as a neurological disease as opposed to ME-CFS as an umbrella term for a spectrum of fatiguing conditions (5 votes ) and 12 abstaining (including three ME charities !), makes us believe that education about ME is even more important now than ever. 
We feel there may now be a chance to forge a better forum for Scottish patients than existed before. 
The information packs are at different levels of information - the larger packs containing conference DVDs. Although we won't have funds to distribute these everywhere we are willing to provide them where necessary.
We hope to get grants to send these packs to all parts of the UK - click here.

 

LET'S DO IT FOR ME

 

Our thanks to a number of fundraisers setting up JustGiving pages to raise funds for biomedical research into ME. The events range from marathon running to screen-free weekends and demonstrate the imagination and determination of people with ME and their carers.
The Let's Do it For ME web site has had a makeover and some of the imaginative and successful fundraising events that have taken place are listed there - click here.

 

 

2013 CALENDAR - HELP FUND BIOMEDICAL RESEARCH

 

The Let's Do It For ME competition for Christmas cards for this year has also produced a wonderful 2013 calendar.
Filled with pictures taken by people with ME or their carers/relatives the 2012 calendar is a great way for raising awareness of ME as well as helping to fund biomedical research into ME.
We also still offer Christmas/New Year cards. The designs and photographs have been made by a great LDIFME initiative which included a competition to decide which photographs would be used. The result is an amazing set of Christmas gifts and fantastic calendar for 2013 - all of which which will help us in raising  awareness. These can be ordered here - click here.

 

 

SOBAFF WALK for IiME
 
 

SOBAFF is a Forces Promotional website for both American and British Forces Charities and they promote worthwhile causes which are made up of volunteers like themselves. We are very honoured to announce that Sobaff has agreed to donate funds raised during their next 500 mile walk to Invest in ME.
More details will be available over the coming months. For more information - click here.

 

 

 

EMEA PETITION
 

 

The European ME Alliance have been working together to bring a petition before the European parliament - click here
The petition seeks to ensure that member states of the EU abide by, enforce and respect the following: 
- that myalgic encephalomyelitis is treated as a neurological disease 
- the medical and civil rights of people suffering from ME are respected 
- the most recent criteria for diagnosis of ME are used by member states 
- biomedical research on ME is fostered and funded by the EU 
- discrimination against people with ME is stopped 

The petition has been sent to all European members of parliament in the EMEA member countries asking for their support. 
We'll have more news later on developments.

 

IIME ADVERTISEMENT for ME

 

IiME took out another full page advert in London Business Matters, the magazine of the London Chamber of Commerce, as we feel we need to reach decision makers and make people aware of what ME really is and what we are trying to do.
The ad appeared in the September edition and also features in the December/January edition.
We have also an additional piece in the latest edition which highlights ME.

Details of the advertisement appears here - and raises awareness of the first research project we wish to initiate with our proposal.  

 

 
We have also advertised in the Coventry and Warwickshire Chamber of Commerce for November/December. C&W in business is the official business publication of Coventry and Warwickshire Chamber of Commerce, one of the West Midlands most successful business associations. With a bi-monthly circulation of 5,000 and a broad readership of over 20,000, C&W in business is a quality publication that reaches the target audience your business needs. 

The IiME Biomedical Research Fund for the proposed examination and research facility has now reached over 71,000. More information - click here.

Please contact us if you want us to send you flyers and posters to distribute or you can download them - click here

The BIG Cause - IiME's slogan for raising awareness and funding for biomedical research into ME. The BIG Cause highlights the need for a strategy of biomedical research into ME to be funded and implemented.   
Posters available in black or white - click here.
 

 

ICC GUIDELINES

 

The ICC guidelines have recently been published. These guidelines have managed to instill as much as is known about ME at the moment.
Dr Bruce Carruthers provided an update on the ICC guidelines for our 2012 conference Journal of IiME - click here.

At the same time the IACFSME has also published the IACFSME Primer. 

Some authors have been involved in preparing both documents and it would be good to see these two documents merged into one in the future.

The IACFS Primer is available here.

The ICC guidelines are available here

Now that the final version has been created we are looking into printing the ICC document and making them available for distribution.

 

 

FLOW CYTOMETER APPEAL

 

Invest in ME are working in collaboration with Alison Hunter Memorial Foundation of Australia to try to raise the remaining funds required for a new flow cytometer for use by PHANU - Population Health and Neuroimmunology Unit. 
The focus of PHANU is to investigate the pathomechanism of myalgic encephalomyelitis, as well as to develop novel biomarkers for the early diagnosis of the illness. Under the leadership of Professors Marshall-Gradisnik and Staines, PHANU works in close collaboration with Daniel Peterson MD Chief Investigator/Clinician of Simmaron Neuroimmune Research Foundation Nevada USA. PHANU is seeking to obtain the new flow cytometer to continue their immunological and genetic investigations. 
Although we are attempting to fund our own research facility we believe there is room also to highlight worthwhile objectives elsewhere. 
Following our collaboration with AHMF, more recently in forming the Clinical Autoimmunity Working Group which met in London in May, we see this new requirement as an urgent and necessary addition to our collaborative work. 
A donation page was set up - click here - and Invest in ME have donated from our own funds as best we can. 
We thank all of those people, from several different countries, who have already donated to this fund.  
Over 1200 has been sent to the Alison Hunter Memorial Foundation for this appeal.

 

 

MAGICAL MEDICINE
 

 

The charity does not give free publicity to pyramid businesses or magical medicine which supposedly cures ME patients just by talking the disease to death. We are not interested in promoting sham schemes or those who claim that their analysis or treatment will work for people with ME when all it does is provide a lucrative income to those behind the scheme.
We are also extremely sceptical of claims from some businesses of their methods of "treating" ME patients and making them "recover".

This story is old but is worthy of publicising again especially as it could have implications for those taking these claims seriously.

The Advertising Standards Agency ruled against one company making claims - see here.

 

 

FALLOUT From The PACE TRIAL
 

 

In the UK ME patients and their families are now witnessing the real fallout from the discredited PACE Trial - a meaningless and flawed trial, using 5 million of scarce funding.

The conduct of the trial has been wholly unscientific (i.e. when empirical evidence from their own studies show their ideas to be wrong, the evidence is either ignored (e.g. as in the FINE Trial), or misrepresented (PACE Trial), and the system which is meant to protect against this - academic peer review - fails completely to protect against the dissemination of papers which contain shocking errors.

To try to shore up the establishment charade and present PACE as valid science the gatekeepers of misinformation are rolling out one after another simplistic and biased articles in the media condemning ME patients as militants.
A raft of puppet freelance journalists have been orchestrated to write a series of articles denigrating ME patients and to support these failed fear avoidance and deconditioning models of ME which have been thoroughly disproven. 
The behaviour of the health editors in the media, as similarly indicated by the Leveson Inquiry, has generally been appalling.

It is quite telling to see how easy it is for known proponents of ME as a somatoform illness to be given media space yet how difficult it is for patients or ME charities who wish to tell the real story to be given the same amount of publicity.

Yet it is patients who have pulled apart the PACE Trial - using social media and those few determined advocates, public individuals and organisations/charities that are really intent on making progress rather than standing still.
 
 
A good example is YouTube.
Here is a series of 4 short and gentle videos explaining why patients are unhappy with PACE.

1: The Pace Race  - click here   
2: 60 - the new 75  - click here   
3: Not So Bad - click here    
4: The force of LOGic - click here  


It's a Funny Old World!

 

 

 

INVITATION to HEALTH MINISTER to ATTEND ME WEBINAR
 

 

Invest in ME have proposed a webinar, to be arranged by IiME, and to include the Secretary of State for Health, and the Chief Medical Officers of the UK - click here.

The idea behind this is to allow the Secretary of State to be aware of the issues currently facing ME patients and their families and develop solutions and a strategy.
The webinar would be held in Westminster and link CMOs and experts on ME from other parts of the UK.

Rather than being influenced by biased media and flawed psychiatric dogma this would give ME patients and their families the chance to directly interact with the Health minister, rather than having to fight misinformation which is continually being given media space. This would also make the minister for health more directly accountable to patients and, most importantly, opens a proper dialogue with the patient community that is not watered down by establishment bias.
 

The response form the DoH has just been received - click here.

Apparently the UK Minister of Health's diary is so full that there is no possibility for the next two years to find a free time - or the minister is just apathetic to the plight of people with ME and their families. Or perhaps the civil servants who control the DoH have decided themselves that the minister need not be bothered with this request.

Whichever scenario is actual we will send in the request again for further clarification - click here.

The DoH and the secretary of state for health have also once again declined an invitation to attend the IiME International ME Conference. In all of the time that IiME has been a charity there has been nothing to distinguish any politician who has held the position of secretary of state for health - a sad indictment on the lack of vision and compassion from politicians and the intransigence and inertia which exists in the DoH.

 

  

 

NORWEGIAN RESEARCH into ME - FUNDRAISING APPEAL
 

 

So we look to Norway for change.
Sadly the Norwegian Health Directorate has failed to fund a larger study of the use of rituximab for ME patients - following the success of the initial study made at Haukeland University Hospital in Bergen.
So, as in the UK with the IiME/LDIFME campaign, patients have to fund the research that we need.

The Norwegian ME Association has now launched a website for a fundraising for the continuation of the Rituximab-study by Drs Mella and Fluge. 

Invest in ME wish give this campaign our full support and we will attempt to help as best we can, recognising how important this is for future research and developments of treatments for ME.

More details - click here.

 

  

 

HUMAN ENTEROVIRUSES and CHRONIC INFECTIOUS DISEASES
 

 

An article from an earlier Journal of IiME (Vol 3 Issue 1 2009) has been made available on our web site. 
Human Enteroviruses and Chronic Infectious Diseases was written by Professor Steven Tracy of Nebraska. We feel this is still very relevant


The article is available here - click here.

 

  

 

AMPLIGEN FAILS to GAIN APPROVAL for ME
 

 

A drug for ME that spent decades in clinical development and won fervent patient support has been turned down for approval by a committee of advisers to the US Food and Drug Administration  (FDA) who voted 9-4 against it.
The drug, named Ampligen (rintatolimod), has not been shown to be effective or safe, the committee determined on 20  December.
 

The article is available here - click here.

 

  

 

New Articles from Margaret Williams and Malcolm Hooper
 

 

New articles from Margaret Williams and Professor Hooper have been copied to the site.

The Rewards of Science in the UK reflects on the recent John Maddox Prize by an organisation ironically called Sense About Science - click here.

The Saga of Science reflects on a letter which was allowed to be published in the Independent from supporters of the psychosomatic model of ME - click here.

Past news items may always be viewed from the News Archive page - click here.

 

  

 

From All Working For  and With Invest in ME
 

 

This Christmas holiday period will not be as happy a time as it should for many people with ME and their families.
We realise that the way people with ME have been treated, and continue to be treated, is a scandal and deserves more attention, action and change.

Our efforts are focused on doing this.

We wish all people with ME and their families as peaceful and happy a Christmas as possible.

We would like to thank all of our wonderful supporters a very happy Christmas and a New Year full of hope - and a huge thank you for all that you have to done to help us all to move forward.
You have really made a difference.


 

  

 

Return to Newsletter Home Pagege

 

Invest in ME

UK Registered Charity Nr. 1114035

PO BOX 561, Eastleigh SO50 0GQ

Support ME Awareness - Invest in ME  

 

Inquiries: All inquiries to Invest in ME - info@investinme.org

To unsubscribe from this newsletter send an email to info@investinme.org and entitle the email unsubscribebe.

Support ME Awareness - http://www.investinme.org