tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

ME Research UK

Part 2 highlights from the 1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID, including-

  • History of ME/CFS

  • Clinical assessment of ME/CFS and

  • Immune and metabolic abnormalities

Read: https://www.meresearch.org.uk/1st-international-conference-on-clinical-and-scientific-advances-in-me-cfs-and-long-covid-lisbon-highlights-part-2/

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
The Untapped Power of “We Don't Know”: Epistemological Humility in the Era of #COVID19

https://journals.sagepub.com/doi/10.1177/23743735241252475

"There are several arguments for how saying “We don’t know” might benefit patients.

@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid @chronicillness
@spoonies #chronicillness #spoonie @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
1/

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
The Norwegian Broadcaster NRK has an article about the survey from the European ME Alliance (EMEA) which included 11 000 people from 44 countries. 74% answered they have little to no health care.

Google translation:
https://www-nrk-no.translate.goog/sorlandet/3-av-4-svarte-at-de-fikk-lite-eller-ingen-stotte.-anja-vil-vaere-en-inspirasjon-for-andre-med-me-1.16838776?_x_tr_sl=no&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

@mecfs

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tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

(UK)
"Government funders of research in ME/CFS, academic researchers and persons or representatives of persons/groups with lived experience of ME/CFS came together to develop a Researcher Toolkit"

https://www.cso.scot.nhs.uk/toolkit-now-available-to-help-me-cfs-researchers/

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

MEAction : Celebrating An Impactful Campaign

https://www.meaction.net/2024/05/17/teachmetreatme-celebrating-an-impactful-campaign/

"Over the past several months, clinicians and medical students across the U.S. have attended presentations, roundtables and conferences to learn about ME/CFS – and how to take the Mayo Clinic Proceedings Continuing Medical Education course on ME/CFS."

@mecfs

1/

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New:
Development of Epidemiological Research Guidelines for #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome in Canada

Free:
https://www.preprints.org/manuscript/202405.1571/v1

#MEcfs #CFS #PwME @mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

UK Quadram Institute New study to shine a light on ME

https://quadram.ac.uk/new-study-to-shine-a-light-on-me/

Researchers from the Quadram Institute and University of East Anglia are testing the feasibility of red light therapy for people with ME. This pilot study, called Light ME Up, is being supported by the charity Invest in ME Research @invest_in_me_research

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

britt, to cfs
@britt@mstdn.games avatar

The elusive good night sleep. 😴

I get one of these once every 3 months, maybe?

I shall compound my interest and make today a rest day. Onward to binging Netflix.

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Opinion piece by a journalist about the lack of care for ME patients in Sweden.

Google translation:
https://www-altinget-se.translate.goog/artikel/me-patienter-ses-som-braakstakar-med-hjarnspoken?_x_tr_sl=sv&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

"Certain groups of patients are more susceptible to negligence, poor care & unethical treatment than others, & ME patients are such a group"

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

An interview by David Tuller DrPH with patient advocate Anil van der Zee about his video (embedded at link) titled "The Prison of M.E." on living with severe ME made for the ME Awareness Day.

https://virology.ws/2024/05/14/trial-by-error-anil-van-der-zees-new-video-on-living-with-severe-me/

@severeme @mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Recording of 13-minute #DecodeME presentation to recent BACME conference
https://youtu.be/UnZ7L905y6M?si=-JnilaSdhzwG-VnC

Features:
Claire Dransfield, Research Manager, Action for ME
Prof Chris Ponting Principal Investigator, DecodeME @cgatist.bsky.social

#MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

1/

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Upcoming BBC Radio 4 programme:

" : Mind Over Matter?"
https://www.bbc.co.uk/programmes/m001zg5q
20:00 May 21 UK time.

I was among a number of people from the ME community that Rachel spoke to to get background information. I'm hopeful this will be good.

A recording should be available later at the link I believe.

@longcovid @mecfs

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

Preprint:

"Epidemiology of Myalgic Encephalomyelitis among individuals with self-reported Chronic Fatigue Syndrome in British Columbia, Canada, and their health-related quality of life"

Link to study:

https://www.medrxiv.org/content/10.1101/2024.05.16.24307437v1.full-text

There's an interesting discussion of this study on the Science for ME forum:

https://www.s4me.info/threads/epidemiology-of-myalgic-encephalomyelitis-among-individuals-with-self-reported-cfs-in-bc-canada-and-their-health-related-quality-of-life-2024-nacul.38579/

@mecfs

#MEcfs #CFS #PwME #Research #Epidemiology

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
An open letter to Anna Gregorowski, chair of BACME (British Association of Clinicians in ME/CFS), from Members of the ME community, facilitated by the Chronic Collaboration.

https://organise.network/actions/petition-an-open-letter-to-anna-gregorow-Nks6ZAJG

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

1/

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

The august CDC in the US have redesigned their ME/CFS section [which contains sections for patients/general public & healthcare providers including a section from medical students].

Unclear to me how much is new material

https://www.cdc.gov/me-cfs/about/index.html

#MEcfs #CFS #PwME @mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
I was fortunate to experience a nice family celebration today in aid of the Irish ME/CFS Association @irishmecfsassociation
https://www.idonate.ie/event/bluesunday2024fortheirishmecfsassociation .

Thanks to my mum for all the work she put in organising it and to everyone who attended. 👍👏

@mecfs

1/

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Thanks to my mum for getting everything ready for our family on (tomorrow).

We’re doing it in aid of the Irish ME/CFS Association https://www.idonate.ie/event/bluesunday2024fortheirishmecfsassociation but other worthy charities are available.

@mecfs

rowdy, to cfs Dutch
@rowdy@mastodon.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
“Remarkable researchers hunting for ‘something in the blood’ of people with ME”

Blog post by Simon McGrath discussing an upcoming UK research study

https://mecfsresearchreview.me/2024/05/08/researchers-hunting-for-something-in-the-blood-of-people-with-me/

#MEcfs #PwME #CFS @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
1/

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Trial By Error Reporting on ME, ME/CFS, #longCovid, & "Medically Unexplained Symptoms"

A crowdfunding for David Tuller DrPH's important work on "debunking awful research". This will secure his academic position at Berkeley until December 31, 2024

https://crowdfund.berkeley.edu/project/42302

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
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