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9 posts4 participants0 posts today

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

Tom Kindlon @tomkindlon@disabled.social

"Time to diagnosis for ME/CFS"

I'm highlighting this mainly to show how long it takes many people to get diagnosed. 5 years in my case with a huge deterioration in 5th year.

And some people sadly die without ever getting a diagnosis.

From:
https://bmjopen.bmj.com/content/15/4/e094658

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

comparison of time to diagnosis before and after the 2021 NICE ME/CFS guidelines, assessing whether updated recommendations influenced diagnosis timelines

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

Tom Kindlon @tomkindlon@disabled.social

This has one paragraph on ME/CFS (see image)

"Princeton and Harvard join other Ivy League schools facing funding cuts, putting research at risk"

https://www.fiercebiotech.com/research/princeton-and-harvard-join-other-ivy-league-universities-facing-federal-funding-cuts

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

Among the research caught in the crosshairs of Columbia’s slashed funding is the Center for Solutions for ME/CFS, a National Institutes of Health (NIH)-backed initiative to understand the biology underpinning myalgic encephalomyelitis/chronic fatigue syndrome. The center’s director told Fierce Biotech in March that while the field is ripe for clinical trials, the lost funds have ground the center's work to a dead halt.

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

Tom Kindlon @tomkindlon@disabled.social

Sympathetic article where 2 Australian researchers Chris Armstrong & Katherine Huang, funded by the Open Medicine Foundation @openmedf discuss their recent paper that used data from the UK biobank

https://pursuit.unimelb.edu.au/articles/We-dont-yet-know-what-causes-chronic-fatigue-syndrome,-but-were-improving-diagnosis

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

Health & Medicine
Research
We don’t yet know what causes chronic fatigue syndrome, but we’re improving diagnosis
Using health factors and blood markers, researchers can now distinguish Chronic Fatigue Syndrome from other conditions for the first time – a giant step closer to formal diagnosis

Photos of Chris Armstrong & Dr Katherine Huang
Published 2 April 2025

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

Tom Kindlon @tomkindlon@disabled.social

"Six photographs about the drudge of ME/CFS: Some recent photos from my ongoing project about Myalgic Encephalomyelitis - aka ME/CFS, ME or Chronic Fatigue Syndrome - like Long Covid" by @AndrewGiffordphotography
https://andrewgiffordphotography.substack.com/p/six-photographs-about-the-drudge

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

Andrew’s Substack
Andrew’s Substack

2

Six photographs about the drudge of ME/CFS
Some recent photos from my ongoing project about Myalgic Encephalomyelitis - aka ME/CFS, ME or Chronic Fatigue Syndrome - like Long Covid.
Andrew Gifford
Apr 01, 2025

Please note that ME/CFS affects multiple bodily systems and symptoms are not uniform between sufferers, and nor from one day to the next. I’m not trying to be representative of all forms of ME/CFS here, but to offer a basic flavour of my ME experience.

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

Tom Kindlon @tomkindlon@disabled.social

Life shrinks with ME/CFS.
Found on the CFS community on Reddit

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

"Life shrinks with ME/CFS" which highlights different severities of ME/CFS and how they affect patients.

**Tom Kindlon** @tomkindlon@disabled.social · 5d

Tom Kindlon @tomkindlon@disabled.social

Registration for online participation in the International ME/CFS Conference 2025 on 12-13 May 2025 is now open

https://events.mecfs-research.org/en/events/conference_2025

Image is from the latest Science for ME weekly update

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

Germany
Registration for online participation in the International ME/CFS Conference 2025 on 12-13 May 2025 is now open. The conference will be centred on the care, research, and treatment of ME/CFS and post-COVID syndrome. It is funded and organised by the German ME/CFS Research Foundation and will take place as an online livestream broadcast from the Harnack House of the Max Planck Society in Berlin.

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

Tom Kindlon @tomkindlon@disabled.social

(US)
'It's just ugly': Federal funding cuts to Columbia University leave chronic fatigue [ME/CFS] research in limbo

https://www.fiercebiotech.com/research/stuck-precipice-funding-cuts-leave-chronic-fatigue-field-dangling-edge-clinical

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

**Tom Kindlon** @tomkindlon@disabled.social · Mar 28

Mar 28

Tom Kindlon @tomkindlon@disabled.social

I thought I would repost this to highlight again some of the many varied symptoms that can be found in #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome

Particularly relevant when similarities with the #LongCovid presentation in some people are being missed

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

APPENDIX 2. ME/CFS Symptom Prevalence and Severity (These prevalence and severity figures are from A definition-based analysis of symptoms in a large cohort of patients with chronic fatigue syndrome, P. De Becker, N. McGregor, and K. De Meirleir. Journal of Internal Medicine 2001;250:234-240.) A total of 2,073 consecutive patients with major complaints of prolonged fatigue were assessed. Among them 1,578 met the Fukuda criteria and of those, 951 met the Holmes criteria. The figures indicate the differences in prevalence and severity of symptoms between these patient groups.

**Tom Kindlon** @tomkindlon@disabled.social · Mar 25

Mar 25

Tom Kindlon @tomkindlon@disabled.social

Recording with:

- Dr David Joffe: an overview of biological basis of Long COVID

- Dr David Tuller: on basis of psycho-behavioural therapy focusing on the PACE trial & a major #LongCOVID trial"

https://youtu.be/V9f_kjlz6Ho

From latest Science for ME update

@longcovid
#PASC #PwLC #postcovid #postcovid19 #LC #PostCovidSyndrome #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#SARSCoV2 #CovidIsNotOver
@auscovid19 #auscovid19
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Kirby Institute Dr David Joffe & Dr David Tuller - Is Long Covid psycho-behavioural or biological? State of evidence
Recording of a recent and great talk at Kirby Institute, Australia. "In this talk, Dr David Joffe will provide an overview of the biological basis of Long COVID, while Dr David Tuller will examine the basis of psycho-behavioural therapy focusing on the PACE trial and a major Long COVID trial."

**Tom Kindlon** @tomkindlon@disabled.social · Mar 24

Mar 24

Tom Kindlon @tomkindlon@disabled.social

"Showering: self-care or self-sabotage?" short blog post by a woman with #POTS and ME.
https://chronicallycraptastic.com/showering-self-care-or-self-sabotage/

"It sounds counterintuitive, but it pans out for people with ME/POTS, sometimes NOT showering is a form of self-care"

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @chronicillness
@spoonies
#PosturalOrthostaticTachycardiaSyndrome #POTS @pots

Photo of the face of a woman whose hair is in the towel following a shower
Showering: self-care or self-sabotage?

**Tom Kindlon** @tomkindlon@disabled.social · Mar 22

Mar 22

Tom Kindlon @tomkindlon@disabled.social

It's the 7th anniversary of this paper.

A lot of it was only possible due to Alem's heroic FOI victory, which the #PACETrial team fought so hard to stop.That surely wasn't because the real results weren't as flattering as they had presented them?

https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3

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

Replied in thread

**Tom Kindlon** @tomkindlon@disabled.social · Mar 21

Mar 21

Tom Kindlon @tomkindlon@disabled.social

“We need more research to understand the disease mechanisms behind ME and develop more targeted treatments. The healthcare system should listen more to patients,”

#MyalgicEncehalomyelitis #ChronicFatigueSyndrome
#mecfs @mecfs

**Tom Kindlon** @tomkindlon@disabled.social · Mar 21

Mar 21

Tom Kindlon @tomkindlon@disabled.social

"Almost no ME/CFS patients return to work: "The help we have provided to patients through the welfare and healthcare systems has had little rehabilitative effect," says a researcher."

https://www.sciencenorway.no/chronic-fatigue-syndrome-diseases-me/almost-no-me/cfs-patients-return-to-work/2482762

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

Almost no ME/CFS patients return to work
"The help we have provided to patients through the welfare and healthcare systems has had little rehabilitative effect," says a researcher.
The Norwegian Labour and Welfare Administration requires ME/CFS patients to go through work-oriented measures in order to be granted disability benefits, which is a challenge for many patients. (Photo: Gorm Kallestad / NTB)
Emilie Wee Journalist
Published 21 March 2025 - 00:01

**Tom Kindlon** @tomkindlon@disabled.social · Mar 21

Mar 21

Tom Kindlon @tomkindlon@disabled.social

New US research

An In-Depth Exploration of the Autoantibody Immune Profile in ME/CFS Using Novel Antigen Profiling Techniques

Free fulltext:
https://www.mdpi.com/1422-0067/26/6/2799

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

Abstract
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating disorder characterized by serious physical and cognitive impairments. Recent research underscores the role of immune dysfunction, including the role of autoantibodies, in ME/CFS pathophysiology. Expanding on previous studies, we analyzed 7542 antibody–antigen interactions in ME/CFS patients using two advanced platforms: a 1134 autoantibody Luminex panel from Oncimmune and Augmenta Bioworks, along with Rapid Extracellular Antigen Profiling (REAP), a validated high-throughput method that measures autoantibody reactivity against 6183 extracellular human proteins and 225 human viral pathogen proteins. Unlike earlier reports, our analysis of 172 participants revealed no significant differences in autoantibody reactivities between ME/CFS patients and controls, including against GPCRs such as β-adrenergic receptors. However, subtle trends in autoantibody ratios between male and female ME/CFS subgroups, along with patterns of herpesvirus reactivation, suggest the need for broader and more detailed exploration.
Keywords: ME/CFS; immunity; autoantibodies; antiviral antibodies; herpesvirus; GPCR; β-adrenergic receptors; muscarinic receptors

**Tom Kindlon** @tomkindlon@disabled.social · Mar 21

Mar 21

Tom Kindlon @tomkindlon@disabled.social

Today is 8-year anniversary of this rejoinder, where we defend our recovery reanalysis paper which found no difference in rates of recovery from #CFS with graded exercise therapy or CBT vs specialist medical care-alone group in £5m #PACEtrial

Free: https://researchgate.net/publication/315482747_PACE_trial_claims_of_recovery_are_not_justified_by_the_data_A_Rejoinder_to_Sharpe_Chalder_Johnson_Goldsmith_and_White_2017

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

**Tom Kindlon** @tomkindlon@disabled.social · Mar 20

Mar 20

Tom Kindlon @tomkindlon@disabled.social

From Medscape (widely read by health professionals):

"What Not to Say to People With Complex Chronic Illness"

https://www.medscape.com/viewarticle/what-not-say-people-complex-chronic-illness-2025a10006ft
(may require free registration)

**Tom Kindlon** @tomkindlon@disabled.social · Mar 20

Mar 20

Tom Kindlon @tomkindlon@disabled.social

It's 8-year anniversary of this paper of mine. It could be useful if somebody feels coerced into doing graded activity or exercise programmes; also to counter claims that the #PACEtrial showed graded activity programs are safe.

https://journals.sagepub.com/doi/full/10.1177/1359105317697323

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

Do graded activity therapies cause harm in chronic fatigue syndrome?
Tom Kindlon 1
Affiliations expand
PMID: 28805516 DOI: 10.1177/1359105317697323
Abstract
Reporting of harms was much better in the PACE (Pacing, graded Activity, and Cognitive behavioural therapy: a randomised Evaluation) trial than earlier chronic fatigue syndrome trials of graded exercise therapy and cognitive behavioural therapy. However, some issues remain. The trial's poor results on objective measures of fitness suggest a lack of adherence to the activity component of these therapies. Therefore, the safety findings may not apply in other clinical contexts. Outside of clinical trials, many patients report deterioration with cognitive behavioural therapy and particularly graded exercise therapy. Also, exercise physiology studies reveal abnormalities in chronic fatigue syndrome patients' responses to exertion. Given these considerations, one cannot conclude that these interventions are safe and risk-free.

Keywords:

**Tom Kindlon** @tomkindlon@disabled.social · Mar 18

Mar 18

Tom Kindlon @tomkindlon@disabled.social

Opportunities and Challenges in Using Electronic Health Record Systems to Study Postacute Sequelae of SARS-CoV-2 Infection: Insights From the NIH RECOVER Initiative

https://www.jmir.org/2025/1/e59217/

From the latest Science for ME weekly update

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

Journal of Medical Internet Research
Opportunities and Challenges in Using Electronic Health Record Systems to Study Postacute Sequelae of SARS-CoV-2 Infection: Insights From the NIH RECOVER Initiative — Hannah L Mandel
"The initial focus among clinicians on respiratory symptoms and widespread lack of knowledge around what were initially considered to be “atypical” presentations, such as postexertional malaise, ME/CFS, POTS, and dysautonomia, also contribute to missingness of relevant diagnoses within the EHR"

**Tom Kindlon** @tomkindlon@disabled.social · Mar 18

Mar 18

Tom Kindlon @tomkindlon@disabled.social

Dysregulation of lipid metabolism, energy production, and oxidative stress in myalgic encephalomyelitis/chronic fatigue syndrome, Gulf War Syndrome and fibromyalgia

From the latest Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #GulfWarSyndrome #GulfWarIllness #GWI