ME Awareness day / week / month and #MillionsMissing May 2020

Trial by Error by David Tuller - Today is May 12th and Everyone's Missing

Much is on hold–but people who have been sick for years or decades are still sick and still waiting for effective treatments. If investigations of the long-term sequelae of COVID-19 can help shed light on the mechanisms behind the development of chronic disease after an infectious illness, perhaps the current devastation will yield future dividends for ME patients. In any event, on this particular day of awareness, I will allow myself to hope that will be the case.
 
Feels like screaming into a particularly empty void today.

The only coverage I have seen so far is the one (from India?) where they insulted us. Nice.

I had very low expectations and I'm still disappointed. Oh well.
 
Gutted that due to technical difficulties the #MEAction UK #MillionsMissing livestream couldn't work today, but we went ahead and recorded it anyhow, it's now up on facebook so get watching:



I think there's some super powerful parts in it, and am so grateful to all the speakers who joined us and the team of us who kept it going despite the tech problems.

Here's the final full line-up of those who spoke:
-Carol Monaghan, MP
-David Green (director of the Florence Nightingale Museum)
-Stuart Murdoch from Belle and Sebastian
-Catherine Hale and Dr Anna Ruddock from the Chronic Illness Inclusion Project
-Dr Nina Muirhead, surgeon and ME educator
-Professor Chris Ponting, Chair of Medical Bioinformatics, University of Edinburgh.
-Vicky Foxcroft, MP and Shadow Minister for Disabled People
-Hannah Sweeney, pwME
-Laura Smith, pwME
-Ellie Rushton, Ally
-Dionne Joseph, mum and carer of Gigi

We'll work over the coming days (when we have some energy!!) to create clips of certain bits, so feel free to add suggestions of which parts spoke to you most here and I'll keep an eye (thought I already have some bits in mind, such as the end of Nina Muirhead's interview)!
 
Millions Missing France are posting a lot on social media: Facebook, Twitter and Instagram. We've launched a YouTube channel with videos from both severe and mild/moderate people with ME.

For example, a video showing before/with ME with a song written by one of our members:


On Instagram, we're featuring people doing #MECFSChallenge aka #JeDisEM: https://www.instagram.com/millionsmissingfrance/

Personally, it's my first year advocating for ME Awareness Week. To be very honest, it does take a massive amount of energy and it feels like screaming into the void: no press coverage, no MPs backing us up. But ME is so poorly known in France that I'll be glad if anyone sees our posts.

The national association, Association française du syndrome de fatigue chronique (ASFC), created a group on the running app Strava and they had over 100 (healthy) participants running a total of 5409km.

We're very happy to see things moving forward rapidly in Germany (and Austria?), congratulations to everyone involved!
 
Some links from Germany

The main action was that the health minister and more politicians got postcards from pwME. There was also some great media coverage.

You can find a (non exhaustive) list of media reports, videos, statements, press releases etc. at the bottom of this article by the German Association for MECFS: https://www.mecfs.de/internationaler-me-cfs-tag-der-einsatz-geht-weiter/


Statement by MP:



Statement by MP:



Trailer #MillionsMissing Germany:



Video by family members and partners (with English subtitles):
 
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Emerge have been sharing a lot of stuff on social media, I particularly loved this song. Shows there is one "body system" unaffected in ME after all: our sense of humour. :rofl:
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https://www.facebook.com/sarah.prosser.73/videos/3338735606137311
 
There was a short interview with Olivia Blake MP as part of the Sheffield event where she talks about why she has become involved with the APPG on ME - personal experience - and also what the APPG are going to be focusing on. It starts about 34:40 :

[/

I got glandular fever in my early twenties and unfortunately for me, I got prescribed graded exercise which made me 100 times worse.

And actually it delayed my eventual diagnosis of an underlying thyroid condition. The difference between the pathway of care for having post-viral fatigue, and eventually being called ME, and having a thyroid condition, were just a million miles away from each other.

That really showed me how limited the support is at the moment, and it's very much reliant on the community to reach out to each other as you are and provide information, because for me the medical interventions that I had were just not up to scratch.

So it is very personal to me. And I haven't really been that blasé about sharing that with people because I think it's a very hidden illness and people just tend not to understand. But now I'm in a position that I can represent people.

I think it's really important that the voice of people who've been through post-viral fatigue and ME, for years and years, do need to get a light shone on the unfortunate misunderstandings and misconceptions that are quite prevalent.

]
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To wind down after an intense #MEAwarenessWeek and #MillionsMissing - Sheffield ME & Fibromyalgia Group are putting on a LIVE MUSIC FESTIVAL

Watch now

There's a whole lineup of musicians, including people with ME, playing until 10 pm this eve!

And a massive thank you to Harriet Rose for organising this.

 
I'm not sure if this has been posted but Olivia Blake MP has written to NICE following the Sheffield ME & Fibromyalgia Group 'Millions Missing' event:

[/RE: NICE Guidance for myalgic encephalomyelitis (ME) treatment
I write as the Member of Parliament for Sheffield Hallam and as an Officer of the All-Party Parliamentary Group (APPG) on ME, regarding the #MillionsMissing campaign.

As you know, people living with ME have been calling the removal of harmful treatments, specifically Graded Exercise Therapy and Cognitive Behaviour Therapy when used as a curative treatment, because of the significant harm these treatments have caused.

While NICE had progressed with rewriting the guidelines for ME, the original timescale for these was delayed from October 20 publication to December 2020, and are now delayed indefinitely due to Covid-19.

The Sheffield ME and Fibromyalgia Group have raised concerns that after the Covid-19 pandemic there could be a significant post-virus rise in ME and other chronic illnesses, and that without urgent action being taken, harmful treatments such as Graded Exercise Therapy could be offered to any patients post-covid.

They have raised similar concerns that patients in the UK are still being advised to increase activity levels, which risk harm.

While these are certainly unprecedented times, I hope you would agree that the risks posed to both current and future patients by the continued usage of graded exercise therapy and other harmful treatments shows an urgent need to resume rewriting NICE guidance for ME treatment, particularly as it is becoming clear Covid-19 will lead to many more people developing ME.

Kind regards,
Olivia Blake MP
]
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CUREME
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Research Round-up: our work over the last year
As ME Awareness Week draws to a close, we’d like to round up some of our research work over the past year. Our published research is found in a number of different journals, but you can always find all of our peer-reviewed publications on our website.

Our team has diverse expertise in clinical research, epidemiology, biobanking and laboratory science, but a key focus of our work has always been ME/CFS in clinical practice. Our Director Dr Luis Nacul’s editorial on clinical practice in ME/CFS (1) was published in October 2019, and Luis and Caroline continue to contribute to the NICE review of national guidelines for ME/CFS, Clinical practice around Europe was also reviewed by members of the EUROMENE network (2).

Other clinical analyses include of risk factors in ME/CFS pathogenesis (3), and of levels of serum creatine kinase in the blood of people with ME, which could provide a potential marker of severe ME/CFS (4). Further clinical analysis on the pathophysiology of ME/CFS is available in preprint (5).

Analysis of blood serum (6) was also conducted with Professor Sir Stephen O’Rahilly FRS, looking specifically at circulating GDF15, which appeared higher in participants with severe ME/CFS.

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Laboratory science at LSHTM
Prof O’Rahilly has been one user of the UK ME/CFS Biobank, and we continue to publish in collaboration with other Biobank users, including Dr Camila Romano, whose work focuses on endogenous retroviruses (7).

Laboratory studies also continued at LSHTM, with many of the significant findings of our first NIH grant (2013-2017) included in Dr Jackie Cliff’s paper on cellular immune function (8). T Cell function was also discussed in Dr Nuno Sepúlveda’s paper, which offered a new model for the possible function of ME/CFS within the body (9). A lay summary and interview is available courtesy of Cort Johnson and Simmaron Research. Laboratory studies in development include on transcriptomics, and on metabolomics with Dr Jo Cambridge, as kindly funded by the ME Association.
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rest here
https://cureme.lshtm.ac.uk/research-roundup-our-work-over-the-last-year/
 
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