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**Tom Kindlon** @tomkindlon@disabled.social · 6h

Tom Kindlon @tomkindlon@disabled.social

Understanding disability/impairment, inclusively: the case of myalgic encephalomyelitis/chronic fatigue syndrome by Joanne Hunt

Screenshot is from the latest Science for ME weekly update

https://www.tandfonline.com/doi/full/10.1080/09687599.2025.2492653

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

Disability & Society
Understanding disability/impairment, inclusively: the case of myalgic encephalomyelitis/chronic fatigue syndrome — Joanne Hunt
"A recurring motif in the biopolitical governing of disability/impairment is the relegation of already marginalised knowledges to the lowest form of evidence, and/or co-option of those knowledges in ways that serve elite interests."

**Tom Kindlon** @tomkindlon@disabled.social · 6h

Tom Kindlon @tomkindlon@disabled.social

"Across England, ME/CFS diagnosis varies 50-fold, with considerable variation by gender, age, ethnicity, and location"

Screenshot is from the latest Science for ME weekly update

https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-025-22603-9

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

BMC Public Health
Unequal access to diagnosis of myalgic encephalomyelitis in England — Samms and Ponting
"Across England, ME/CFS diagnosis varies 50-fold, with considerable variation by gender, age, ethnicity, and location" "Lifetime prevalence of ME/CFS for English females and males may be as high as 0.92% and 0.25%, respectively" "his improved estimate of ME/CFS prevalence allows more accurate assessment of the socioeconomic and disease burden imposed by ME/CFS."

**Tom Kindlon** @tomkindlon@disabled.social · 6h

Tom Kindlon @tomkindlon@disabled.social

UK: A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform

Screenshot is from the latest Science for ME weekly update

Links:
https://psp-me.co.uk/campaign-strategic-approach-mecfs-research/

https://www.s4me.info/threads/uk-a-proposal-for-an-me-cfs-long-covid-and-post-infectious-disease-research-platform.43778/

https://www.meresearch.org.uk/academics-researchers-and-me-charities-unite-behind-post-infectious-disease-platform-call/

https://organise.network/actions/petition-a-proposal-for-an-me-cfs-long-c-xWkB_pcn/saf/take-action

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

UK A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform
"A new campaign has been launched today by Action for ME, ME Research UK and the ME Association based on the work of a group of academics, practitioners, clinicians, charity representatives and people with lived experience of ME who have been working together to input to the cross-government Delivery Plan on ME/CFS." The proposal is for a government funded group of research hubs with a single coordinating centre.
Proposal | Thread with links to related documents
MERUK article | Thread
Signatories are invited for an open letter to the UK government supporting the proposal.
Letter | Thread

**Tom Kindlon** @tomkindlon@disabled.social · 17h *

17h *

Tom Kindlon @tomkindlon@disabled.social

(US) Call to action: Ask your members of Congress to preserve the Chronic Fatigue Syndrome program at CDC

https://solvecfs.quorum.us/campaign/120562/

"Urgent Appeal to Preserve & Strengthen the CDC’s ME/CFS Program"

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

The CDC's ME/CFS Program May Get Cut. Here's Why That Matters.
The federal government is considering eliminating the CDC’s only program dedicated to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — a devastating disease that affects millions of Americans and is often triggered by viral infections like COVID-19.

This program has quietly played a critical role in public health, and its disappearance would leave patients and families without essential support. It’s not just about ME/CFS — this program also benefits the rapidly growing number of people living with Long COVID, many of whom now meet the criteria for ME/CFS.

You can read more here: https://www.medpagetoday.com/special-reports/features/115174

If we lose this program, we lose:

National tracking data on how many people are affected

A large-scale clinical research study to improve diagnosis and treatment

A program that helps school nurses support chronically ill students

Accredited education for doctors so they can better recognize and treat ME/CFS

A platform that coordinates efforts across federal agencies, researchers, and patient groups

🧬 We are finally making progress toward answers. To cut funding now would waste years of investment and rob millions of hope.

What You Can Do:
Use our simple tool to contact Congress and urge them to protect and strengthen the CDC’s ME/CFS program in the upcoming federal budget.

🗣️ Every email, call, and tweet matters. Your story may be the one that makes a

**Tom Kindlon** @tomkindlon@disabled.social · 17h

17h

Tom Kindlon @tomkindlon@disabled.social

The upcoming Invest in ME Research @invest_in_me_research International ME Conference will allow collaboration and networking between European and international researchers, clinicians, early career researchers, and European ME patient groups and charities.

https://investinme.org/iimer-newslet-2504-european-me-research.shtml

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

investinme.orgInvest in ME Research - European and International ME Research - Conference WeekInvest in ME Research European ME Group Workshops - 2025 Vision for ME

**Tom Kindlon** @tomkindlon@disabled.social · 1d

Tom Kindlon @tomkindlon@disabled.social

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:
https://crowdfund.berkeley.edu/project/46120

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

**Tom Kindlon** @tomkindlon@disabled.social · 1d

Tom Kindlon @tomkindlon@disabled.social

UK Parliament: Joint ME and Long Covid All Party Parliamentary Group meeting

Screenshot is from the latest Science for ME weekly update

Links:
https://www.actionforme.org.uk/may-joint-me-and-lc-appg/
https://appgme.co.uk/contact-your-mp

UK Parliament Joint ME and Long Covid All Party Parliamentary Group meeting - Wednesday 14 May, from 5pm - 7pm.
Speakers will include Professors Danny Altmann, David Strain and Chris Ponting and Dr Binita Kane. There is a template letter for people in the UK to use to invite their MP to the meeting.
AfME article | APPG template letter | Thread

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · 1d

Tom Kindlon @tomkindlon@disabled.social

9/
SYMPTOM SEVERITY AND SEVERITY HIERARCHY PROFILE

https://emerge.org.au/wp-content/uploads/2023/04/symptomseverityhierarchyfromthinkgp.pdf

#MEcfs #CFS
@mecfs

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · 1d

Tom Kindlon @tomkindlon@disabled.social

‪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

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · 1d

Tom Kindlon @tomkindlon@disabled.social

“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

**Tom Kindlon** @tomkindlon@disabled.social · 1d

Tom Kindlon @tomkindlon@disabled.social

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

Free:
https://openresearch.nihr.ac.uk/articles/5-39/v1

@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,

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · 1d

Tom Kindlon @tomkindlon@disabled.social

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.

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · 2d

Tom Kindlon @tomkindlon@disabled.social

4/
HHS/CDC: Internal budget document reveals extent of Trump’s proposed health cuts

Screenshot is from the latest Science for ME weekly update

Links:
https://archive.is/2025.04.16-204219/https://www.washingtonpost.com/health/2025/04/16/hhs-budget-cut-trump/
https://skywriter.blue/pages/did:plc:fxzd5277so73zk3uxvlpzrg6/post/3lmzhncnyzs2m
https://solvecfs.quorum.us/campaign/120562/

#MEcfs #CFS @mecfs

USA - HHS/CDC Internal budget document reveals extent of Trump’s proposed health cuts
A Washington Post article reveals large cuts are planned for the HHS budget. Jaime Seltzer from #MEAction explains more details about these cuts (Bluesky thread) including how they would impact ME/CFS research and other programs. In response, Solve ME/CFS has set up a tool for folks to contact their members of congress.
Article (no paywall) | Thread

**Irish ME/CFS Association** @IrishMECFSAssociation · 2d

Irish ME/CFS Association @IrishMECFSAssociation

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

Just enter 20100254 or myalgic and you will find us.
https://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

**Irish ME/CFS Association** @IrishMECFSAssociation · 3d

Irish ME/CFS Association @IrishMECFSAssociation

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

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

**Tom Kindlon** @tomkindlon@disabled.social · 3d

Tom Kindlon @tomkindlon@disabled.social

"Preparing information for your doctor"

https://www.emerge.org.au/preparing-information-for-your-doctor-2

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

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Preparing information for your doctor
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Communicating your limitations

Many symptoms of ME/CFS can make communicating difficult. Some people who live with ME/CFS report that at times they struggle to recall information, lose their train of thought easily and find comprehending and processing new information difficult.

As your energy limitations are reached and your battery starts to run flat, these symptoms can get worse. This can make medical appointments stressful and remembering all the information you want to discuss with your doctor can be difficult.

Emerge Australia has put together some helpful ideas and tools to help you get the most out of your medical appointments. We will introduce you to the symptom severity and severity hierarchy scale, and the Activity-symptom tracker, and show you how to use the NAM criteria for diagnosis of ME/CFS.

**Tom Kindlon** @tomkindlon@disabled.social · 3d

Tom Kindlon @tomkindlon@disabled.social

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

https://crowdfund.berkeley.edu/project/46120

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

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · 4d

Tom Kindlon @tomkindlon@disabled.social

“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

Continued thread

**Irish ME/CFS Association** @IrishMECFSAssociation · 4d

Irish ME/CFS Association @IrishMECFSAssociation

14/
"10-Minute NASA Lean Test (a standardized passive stand test)"
(Page 1 of 4)

https://batemanhornecenter.org/wp-content/uploads/filebase/providers/mecfs/10-Minute-NASA-Lean-Test-Clinician-Instructions-06_12_2022.pdf

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

#MEcfs #CFS @mecfs

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · 4d

Tom Kindlon @tomkindlon@disabled.social

“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

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