UK Centre of Excellence for ME Information

Spreading Awareness of ME - Icelandic Style



The value of the UK Centre of Excellence for ME hub is becoming more apparent as we are able to build the momentum and gain more support.

This also allows more valid information about ME to be broadcast.

Having the possibility to make people aware of the biomedical research which is underway in leading instititutions such as Quadram Institute Bioscience is a powerful aid to help the public understand the true nature of this disease, the urgency of the situation and the work which is being carried out to find the cause(s)and treatments for this devastating condition.

An example of this was recently when our European ME Alliance Iceland colleagues - ME FÉLAG ÍSLANDS - arranged a conference on ME.

Professor Simon Carding travelled to Reykjavik to speak on the subjects - Establishing a European ME/CFS Research Centre of Excellence in Norwich: Is there a Gut-Brain Link in ME/CFS?

The conference took place on 28th September [1] and was well attended.

We have been informed that there was good feedback on the presentation and a "buzz" had been created.

Amongst the guests there were doctors and other health care professionals from both of the clinics that most ME patients attend at some point in their life.

Of the two clinics one uses a more holistic approach and offers all kind of therapies - including things such as mud baths and acupuncture.
The other clinic is a more conventional setup.

The clinics were very excited about everything they heard at the conference with short but interesting conversations during the intervals.

There was some talk of how they must reconsider their approach to a kinder, softer approach to ME.

It was remarked how important this conference day was as it will have a great impact on how patients will fare when they finally get some help from the healthcare system.

There were also guests from the healthcare sector - and important concern as, in Iceland, when one falls out of the job market due to health problems, one can go to a Vocational Rehabilitation Fund, VIRK.

Their mission is to get people back to work (as all patients want).

They did not know about ME and patients have been affected by this ignorance.

Also attending were the Fibromyalgic center. Many ME patients in Iceland go there at some point currently.
But their approach has been until now that ME and FM is basically the same thing; it is just a question where the patient is on that "spectrum" (tired or aching). Thanks to ME Felag's conference - and the input from Professor Carding, Dr Dan Peterson, Dr. Øystein Fluge, Dr Nigel Speight and others, they now know more about ME.

One presenter at the conference was a very well-known news reporter and all-around media man in Iceland - and also an author and former member of parliament.
Now he runs a TV station with news- and cultural programs.
He also learned a great deal from this day and there is now likelihood of a programme on ME.

This demonstrates the importance of having a UK Centre of Excellence for ME which can use up-to-date knowledge of the research taking place and assist in educating other important sectors in societies about ME - another of the charity's goals.



Our thanks and congratulations to our EMEA colleages ME FÉLAG ÍSLANDS.

Our thanks also to Professor Carding from the Quadram Institute Bioscience.

Videos from the conference will be made available by ME FÉLAG ÍSLANDS and we will have a link here to them.

References

  1. ME FÉLAG ÍSLANDS Conference - https://www.mefelag.is/me-conference-2017
  2. Quadram Institute Bioscience - https://quadram.ac.uk/targets/me-cfs/
  3. Invest in ME Research funded research trial at Centre of Excellence hub - the severe ME study - http://www.investinme.org/ce-news-1709-02.shtml
  4. More about the research http://investinme.org/ce-gm-projoverview.shtml

Our plans are there - the development of the UK Centre and links to other research points and international Centres has been established.
Research is underway.

We invite all to support us.

Ways to help us are shown in the column at the right of this page.


Please join our #CofEforME support campaign - ce-Support-cofeforme.shtml



Invest in ME Research have arranged for our 13th Invest in ME Research International ME Conference in London for 1st June 2018.


We hope for another wonderful event full of international collaboration and progress.

Register here