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Tom Kindlon

Crowdfund campaign via Berkeley University to secure @david David Tuller's important work and position for further 6 months

Screenshot is from the latest Science for ME weekly update

Link:
crowdfund.berkeley.edu/project

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Trial by Error: Reporting on ME, ME/CFS, Long Covid, & so on... New crowdfund campaign via Berkeley University to secure David Tuller's important work and position for further 6 months. The aim is to raise $68,000 by May 5th. 10 years ago Tuller launched Trial By Error in 2015 and his work since then with reporting, investigation, analysis, letters and much more has been invaluable for moving matters forwards. Crowdfunding l Thread
Apr 29, 2025, 01:26 · · 3 · 0
Tom Kindlon

‪8/‬

‪“(Contd) and the level of activity you can complete over a week (or more if you choose.) You may want to share an example of one or two days, or a whole week with your doctor. Using simple entries into a calendar or diary is an easy way to record your activity.”‬

‪#MEcfs #CFS‬
@mecfs

Apr 28, 2025, 17:23 · · 1 · 0
Tom Kindlon

7/

“Sharing your record of activity

Many people who live with ME/CFS utilise activity-symptom trackers to support them in pacing. It can also be useful to show your doctor these records,to support them to understand how your symptoms are affecting your life (contd)”

#MEcfs #PwME #CFS
@mecfs

Apr 28, 2025, 17:15 · · 0 · 0
Tom Kindlon

New:
"Defining a High-Quality Myalgic Encephalomyelitis/Chronic Fatigue Syndrome cohort in UK Biobank"

Free:
openresearch.nihr.ac.uk/articl

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

Abstract Background Progress in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) research is being slowed by the relatively small-scale studies being performed whose results are often not replicated. Progress could be accelerated by analyses of large population-scale projects, such as UK Biobank (UKB), which provide extensive phenotype and genotype data linked to both ME/CFS cases and controls. Methods Here, we analysed the overlap and discordance among four UKB-defined ME/CFS cohorts, and additional questionnaire data when available. Results A total of 5,354 UKB individuals were linked to at least one piece of evidence of MECFS, a higher proportion (1.1%) than most prevalence estimates. Only a third (36%; n=1,922) had 2 or more pieces of evidence for MECFS, in part due to data missingness. For the same UKB participant, ME/CFS status defined by ICD-10 (International Classification of Diseases, Tenth Revision) code G93.3 (Post-viral fatigue syndrome) was most likely to be supported by another data type (72%); ME/CFS status defined by Pain Questionnaire responses is least likely to be supported (43%), in part due to data missingness. Conclusions We conclude that ME/CFS status in UKB, and potentially other biobanks, is best supported by multiple, and not single, lines of evidence. Finally, we raise the estimated ME/CFS prevalence in the UK to 410,000 using the most consistent evidence for ME/CFS status,
Apr 28, 2025, 12:57 · · 1 · 0
Tom Kindlon

4/
“Screenshot Bringing a support person to your appointment”

#MEcfs #CFS
@mecfs

Bringing a support person to your appointment Not everyone will need or want a support person to accompany them to their medical appointment. For those who do, it is a good idea to decide what role you would like the support person to take and talk with them about this before going to your appointment. Before you talk to your support person, ask yourself: Do you want or need someone to drive you to and from your medical appointment? Will you want the support person to come into the waiting room or the doctor’s room, or wait in the car? If your support person comes into the doctor’s room, will you want them to advocate on your behalf, or just listen and take notes? If you decide to bring a support person or advocate to your medical appointment, you may like to ask them to help you prepare. This will allow time for you to discuss their role and how they can support you.
Apr 28, 2025, 12:14 · · 1 · 0
Irish ME/CFS Association

We'd love if people would nominate us for one of these £5000 prizes.

Just enter 20100254 or myalgic and you will find us.
health.movementforgood.com/

You can also vote for other charities if you want.

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

HEALTH & WELLBEING SPECIAL DRAW 7 DAYS 10 CHARITIES £5,000 EACH OPENS 28th APRIL Ecclesiastical Insurance Office plc is the promoter BENEFACT GROUP Our second £5,000 draw of 2025 is nearly here! To support the incredible work that so many charities do to support Health and Wellbeing, our second special draw of the year will award £5,000 to 10 charities working in this area. The nomination window opens next week for seven days only – Monday 28th April to Sunday 4th May, so please mark your calendar and come back then to get your favourite charities in the running. Find out more
Apr 28, 2025, 01:20 · · 2 · 0
Irish ME/CFS Association

Volunteers sought for blue ribbon collection at Cornelscourt Shopping Centre, South Dublin on Sat May 10 . Please contact us or email tomkindlon [at] irishmecfs dot org if you might be interested.

See also next post

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

1/

Volunteers sought for blue ribbon collection at Cornelscourt Shopping Centre, South Dublin on Saturday May 10 Photograph of 4 volunteers collecting at a previous collection there
Apr 26, 2025, 21:33 · · 1 · 0
Tom Kindlon

Donated

David Tuller DrPH @david has shown he has a:
-good skill set for this type of work

-good knowledge base from following the field closely for many years

-an appetite as it can be very draining

Proponents of exercise/psychologicalisation/etc are still around

crowdfund.berkeley.edu/project

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain

David Tuller's Trial by Error Spring 2025 Virology blog logo Image Share to Maximize IMPACT $36,830 54% Raised toward our $68,000 Goal 282 Donors 9 days left Project ends on May 05, at 11:59 PM PDT Project Owners Project Owner Image
Apr 26, 2025, 14:27 · · 3 · 0
Tom Kindlon

8/

“Talk to your friend about their energy limitations & how to help reduce the PEM they may experience. Remember, every person who lives with ME/CFS or #longCOVID will have different limitations that can change, depending on the severity of their illness or how charged their battery is”

#MEcfs #CFS
@mecfs @longcovid

Apr 26, 2025, 00:43 · · 4 · 0
Tom Kindlon

3/

“People with ME/CFS or long COVID are not able to do all of the activities they used to be able to do. They can experience an increase in symptoms after simple activities, which would not have been a problem before ME/CFS came into their lives.”

#CFS #LongCovid
#mecfs @mecfs @longcovid

Apr 25, 2025, 19:23 · · 4 · 0
Tom Kindlon

🧵
It would be great if friends of people with ME/CFS or long COVID would take the time to read this. These conditions are very socially isolating and lonely and patients would love to maintain friendships

emerge.org.au/how-to-support-y

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

1/

How to support your friend who lives with ME/CFS or long COVID Home / MECFS Information / How to support your friend who lives with ME/CFS or long COVID Emerge Australia has put together this guide to help you understand what someone with ME/CFS may be experiencing, and to provide some tips to help support them to stay connected.
Apr 25, 2025, 18:47 · · 19 · 0
Irish ME/CFS Association

13/
Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
(Page 8 of 8)
mayoclinicproceedings.org/acti

One of the fact sheets we sent to 3612 Irish GPs recently

#MEcfs #CFS
@mecfs

Screenshot of page 8 of PDF
Apr 24, 2025, 21:56 · · 1 · 0
Irish ME/CFS Association

We'd love if some people supported us on Blue Sunday, May 18 either individually or by holding an event.

Donations can be made at this page
idonate.ie/event/BlueSunday202
or
alternatively people can set up their own donation page for us here: idonate.ie/cause/irishmecfsass

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

 Blue Sunday The Tea Party For M.E. 18th May 2025 • Wear something blue (pyjamas count!) · and/or Dig out your best cups and saucers and/or • Bake or buy your favourite cake and/or • Post a photo of your tea party set-up to social media and/or • Invite others to enjoy tea and cake with you in-person, via video call, or by sharing photos and/or • Donate the price you'd pay in a café to an M.E. charity and/or • Connect with others online who are doing the same, by commenting on their posts Do one, a few, or all, to show your support for the M.E. community @theslowlane.me f@theslowlane_ME www.the-slow-lane.com
Apr 24, 2025, 21:11 · · 1 · 0

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