We wrote some years ago that there can be a predictability about annual awareness campaigns, for whatever cause - with the risk that these become as much concerned with publicising the promoter as the cause itself.

For ME, raising awareness is often about publicity surrounding demands for change or action, demanding others act or alter policies.

And these keep occurring - yet has anything changed for ME?

To illustrate this we looked back to an awareness month/day before the pandemic.

In 2018 we wrote this - ME Awareness Month - A Week in the Life of a Charity
to describe various things in which the charity was involved during awareness month.
It seems a long time ago.

Back then we were busy with multiple tasks.

  • Preparing almost every element of our international ME conference week 2018
  • Trying to increase European and international collaboration amongst researchers
  • Working with EMEA colleagues to support development of services for people with ME
  • Preparing our response for a NICE guidelines development meeting
  • Supporting fundraising for research
  • Busy with developments for the new Quadram Institute centre
  • As chair of European ME Alliance busy preparing for the EMEA AGM
  • Helping some families with problems with the care their children were receiving
  • Dealing with a contact from a family where a person with ME was contemplating suicide
  • And trying to assist and help a family who wished to donate post-mortem tissue from a severely ill patient to medical research

2024 - has much changed regarding ME?
Some of the above experiences are still too familiar.

We can point to the only clinical trial for ME starting this year - thanks the wonderful support from The Hendrie Fondation and from our supporters.
We have the first fellowship for ME - followed also by our second fellowship for ME thanks to LunaNova.
We have established the European ME Research Group Early Career network - Young EMERG.
We worked with our European ME Alliance colleagues and the recent pan-European ME Patient Survey results demonstrate the effectiveness of this along with accreditation from WHO Europe.
We have been involved in the recent NIH Roadmap project - results to be published in May.
We have been involved also in the less successful DHSC Interim Delivery Plan project.
And we continue our International ME conference Week - this year in June - with the 13th researchers' colloquium, the 16th international ME conference, another workshop from Young EMERG and the European ME Research Group (EMERG) meeting.
The centre in Norwich Research Park has all of the necessary building blocks to deserve further funding as the UK/European Centre or Excellence for ME that it can develop into - given funding.
More research is being planned at the centre with new collaborations formed.
EMERG and EMEA have been involved in three applications between them for research funding for ambitious projects.
More in the chairman's welcome message for this year's international ME conference week - click here

So some room for optimism.

Yet we are reminded that back in 2018 a friend passed away - in a situation that is sadly still too common an occurrence today.
A situation that should never happen.

And so we have to wonder what has changed?

In 2018, before her passing, Anne Örtegren made one final, supreme effort to get the message through to people who needed to listen, to learn and to comprehend the severity of the situation for people with ME.

Anne was articulate, knowledgeable, courageous and positive.
Her Final Post just needed to be listened to, to be understood, to act.
No other Awareness Day message need be made.

In 2021 Invest in ME Research made a video of Anne's Final Post - made for the European ME Alliance roundtable webinars.

This video is shown below.

We urge all healthcare policymakers, clinicians, politicians, research funding agencies and those in the media to listen to it.
This is to you.

On International ME Awareness Day 2024 we highlight again the last request from Anne's Final Post - and echo Anne's plea -

"You need to give ME/CFS patients a future"

Caution: The video below may contain content that could be upsetting to some people

Further Information

Last Update May 2024