@tomkindlon@disabled.social
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tomkindlon

@tomkindlon@disabled.social

95% of posts on #MyalgicEncephalomyelitis, #LongCovid or #chronicillness.

With ME/CFS 35 years, severely affected 29 years. Health has deteriorated post Covid (March 2022).

Irish ME/CFS Association* trustee 26 years. 26 publications in peer-reviewed journals.

MEpedia entry which has links to my social media accounts (among other things): https://me-pedia.org/wiki/Tom_Kindlon #ChronicFatigueSyndrome #MECFS #PwME #fedi22 *IrishMECFSAssociation@mastodon.ie

This profile is from a federated server and may be incomplete. Browse more on the original instance.

tomkindlon, to mecfs
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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
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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
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🧵
Has ME/CFS's Time Finally Come at the NIH? The Vicky Whittemore Interview

A 1-hour conversation between Cort Johnson & Vicky Whittemore from NIH who is "involved in virtually everything of consequence happening with at the NIH"

https://www.healthrising.org/blog/2024/05/13/nih-chronic-fatigue-syndrome-whittemore/
@mecfs


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tomkindlon, to mecfs
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New from UK team:

A systematic review of quantitative EEG findings in , and

Free full text:
https://www.sciencedirect.com/science/article/pii/S1388245724001445

@longcovid @mecfs

@fibromyalgia

tomkindlon, to mecfs
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Recording of 13-minute 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

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tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Pleased to be able to support David Tuller DrPH to help him continue his important work on ME, , &
" "

He has particularly focused on (bio)psychosocial
claims/researchers:we've learned they need to be watched closely
https://crowdfund.berkeley.edu/project/42302

@mecfs @longcovid

tomkindlon, to mecfs
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Upcoming BBC Radio 4 programme:

" #LongCovid : 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.

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

tomkindlon, to mecfs
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🧵
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

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tomkindlon, to mecfs
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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

tomkindlon, to mecfs
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🧵
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

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tomkindlon, to coronavirus
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(pay wall)
"Parents of children with claim they have been accused of faking or exaggerating their child’s illness, leading to social services’ involvement and... court cases and the threat of the child’s removal from the home."

https://inews.co.uk/news/parents-children-long-covid-accused-making-up-3034629

@longcovid

@covid19
@novid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Thanks to my mum for getting everything ready for our family #TeaPartyForME2024 on #BlueSunday2024 (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 #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
Factors associated with having previously received a diagnosis of , and : A cross sectional DanFunD study

Free full text:
https://www.sciencedirect.com/science/article/pii/S0022399924001053

@mecfs


@fibromyalgia @ibs

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tomkindlon, to mecfs
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🧵
“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

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tomkindlon, to mecfs
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Trial By Error Reporting on ME, ME/CFS, , & "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

tomkindlon, to mecfs
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News from NIH: ME/CFS Research Roadmap now available

Links in image:

https://www.ninds.nih.gov/about-ninds/who-we-are/advisory-council/nandsc-mecfs-research-roadmap-working-group

https://www.ninds.nih.gov/sites/default/files/2024-05/Report%20of%20the%20MECFS%20Research%20Roadmap%20Working%20Group%20of%20Council_508C.pdf

https://videocast.nih.gov/PastEvents

@mecfs

tomkindlon, to mecfs
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New important guidelines in German

Interdisciplinary, collaborative D-A-CH (Germany, Austria and Switzerland) consensus statement concerning the diagnostic and treatment of

Free:
https://link.springer.com/article/10.1007/s00508-024-02372-y

@mecfs @mecfs_de

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tomkindlon, to mecfs
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The PACE trial: This $8 Million Medical Trial Is A Joke

https://youtu.be/bzh8pT-g9v0?si=lKaPgE89O297zJad

YouTuber and behavioural scientist Pete Judo presents the infamous #PACEtrial which he describes as "what is possibly the worst medical trial in modern history. (contd)”

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID

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tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Long list of hashtags:
@chronicillness
@spoonies
@mecfs

@longcovid
@fibromyalgia










tomkindlon, to longcovid
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The Role of Heparin in Postural Orthostatic Tachycardia Syndrome and Other Post-Acute Sequelae of COVID-19

Free full text:
https://www.mdpi.com/2077-0383/13/8/2405

Hashtags:

@longcovid

@pots

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tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New:
Socioeconomic determinants of / in Norway: a registry study

Free:
https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-024-18757-7

Comment: Lower health literacy/similar could make it more difficult for people with lower educational attainment to get diagnosed

@mecfs

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tomkindlon, to mecfs
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@mecfs

tomkindlon, to mecfs
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New:
Sex and disease severity-based analysis of steroid hormones in ME/CFS

Free full text:
https://link.springer.com/article/10.1007/s40618-024-02334-1

@mecfs

tomkindlon, to mecfs
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News from NIH: Registration now open for the NIH ME/CFS Webinar on May 28

Links in image:
https://nih.zoomgov.com/webinar/register/WN_X9UFe5JRT5uJRg16YR3Wgg#/
https://support.zoom.com/hc/en/article?id=zm_kb&sysparm_article=KB0060564
https://www.nih.gov/mecfs/events

@mecfs

tomkindlon, to mecfs
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The prestigious Centers for Disease Control and Prevention (CDC) in the US have released their ME/CFS International Awareness Day (May 12) page for 2024

https://www.cdc.gov/me-cfs/resources/awarenessday.html

@mecfs

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