@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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New from the US:

Mitochondrial DNA Missense Mutations ChrMT: 8981A > G and ChrMT: 6268C > T Identified in a Caucasian Female with #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (#MECFS) Triggered by the Epstein-Barr Virus

Free:
https://www.hindawi.com/journals/crig/2024/6475425/

#CFS #PwME @mecfs

tomkindlon, to mecfs
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"Dame Shirley Conran, author and campaigner who blazed a trail with Superwoman and Lace – obituary Telegraph Obituaries"

Free:

https://www.yahoo.com/news/dame-shirley-conran-author-campaigner-102213353.html

Following my mother writing to her, she once did an interview on ME on Irish national radio

RIP

@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

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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 novid
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: plasma levels of neurofilament light chain in mild patients with neurocognitive symptoms

https://www.nature.com/articles/s41380-024-02554-0

"pNfL levels are significantly higher in long patients with mild acute and neurocognitive symptoms when compared to HC"

1/

Hashtags:
@longcovid

@covid19 @novid @auscovid19

tomkindlon, to mecfs
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The recording has just been made available for the NIH ME/CFS Symposium on May 2 on the $8M study "Deep phenotyping of post-infectious / "
https://videocast.nih.gov/watch=54675

Agenda is here:
https://mregs.nih.gov/channels/F1P5-F2L3

@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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🧵
UK DecodeME launches data access process

https://www.decodeme.org.uk/data-access/

"86% of DecodeME participants consented to sharing their de-identified data with other researchers and 95% of participants consented to being recontacted for new research projects"

@mecfs

1/

tomkindlon,
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2/

" is offering data access to other approved researchers until the end of the study in August 2025 in the hope that it will help accelerate research towards possible diagnostic tests and treatments for ME/CFS."


@mecfs

tomkindlon,
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3/

"All applications will be reviewed by our Data Access Committee and will only be approved if they meet our high standards, are ethical and worthwhile."


@mecfs

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New US preprint:
Oxidative Stress is a shared characteristic of ME/CFS and

https://www.biorxiv.org/content/10.1101/2024.05.04.592477v1

Authors include Ron Davis, Mark Davis & Hector Bonilla

@mecfs

tomkindlon, to mecfs
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Ruth Braham created this powerful painting, capturing the essence of life robbed by . It portrays so well the agonizing reality of being bound to a bed for decades

@mecfs

@severeme

tomkindlon, to mecfs
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TIME100 Health is a list of the most influential people in 2024 within health

Jamie Seltzer, scientific director of made the list. In the presentation of Seltzer,TIME writes US medical schools have barely taught about ME/CFS & Jamie Seltzer is working to change this.

@mecfs

1/

tomkindlon,
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2/

Further that "her overriding goal is ensuring that patients' voices are heard at all levels of the medical system, from academic research all the way to pimary-care doctors' office".

Congratulations Jaime

https://time.com/6967257/jaime-seltzer/


@mecfs

tomkindlon,
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3/

ME/CFS was also a theme for another who made the list, Dr Avindra Nath for his NIH intra-mural ME/CFS study.

Presentation of Nath https://time.com/6968936/avindra-nath/


@mecfs

tomkindlon, to disabled
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UK Government Open Consultation
“Modernising support for independent living: the health & disability green paper”

Article with links
https://www.gov.uk/government/consultations/modernising-support-for-independent-living-the-health-and-disability-green-paper

The government has published a series of documents including a Green paper & evidence pack

@disability @disabilityjustice
@chronicillness @spoonies

1/

tomkindlon,
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2/

There is consultation questionnaire about whether assessment for PIP should be based more on a diagnosed condition or on its functional impact; about the need for assessment and review for awarding PIP, and how to assess fluctuating conditions.


@disability @disabilityjustice @chronicillness @spoonies
@mecfs

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UK Parliament:
A Westmister Hall debate on ME/CFS introduced by Sajid Javid, MP, was held on May 1.

Points raised include the lack of implementation of the NICE guideline in many areas, inappropriate hospital treatment of severely affected people and delay in publishing the government implementation plan set up by Javid two years ago.

Action for ME report
https://t.co/7sX8A7IvkN

@mecfs

1/

tomkindlon,
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3/
(Paywall)
The (UK) Times
Sajid Javid: patients with ME are being ‘dismissed’ by doctors

https://www.thetimes.co.uk/article/sajid-javid-patients-with-me-are-being-dismissed-by-doctors-twp2xhs5n

Javid said he had heard “disturbing reports” the final report would not be published until the end of the year, and “there is absolutely no time to waste”

@mecfs

tomkindlon,
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3/

"The debate was told that patients with ME are being “let down time and time again” by poor hospital care and a lack of specialist NHS services. Most NHS hospitals are also failing to follow official NICE treatment guidelines for those with the condition."

@mecfs #MEcfs #CFS #PwME

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Not much time left if you want a free appointment for your child (under 21) with Dr Speight in one of these venues. Email: speight [at] doctors.org.uk (email not to be used for general enquiries)

@mecfs

tomkindlon,
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I've heard from parents from 3 separate families who were pleased with their appointments with Dr Speight in Dublin today.

@mecfs

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New Leicester (UK) & study that is recruiting

Investigating the impact of ME/CFS & on visual perception & sustained attention using Pupil Frequency Tagging & EEG

https://dougiebarrett.github.io/Lab/pages/ME_CFS.html
ME Research UK-funded

Not a biopsychosocial study

@mecfs

tomkindlon,
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2/

This study [in Leicester, UK] is currently recruiting individuals with ME/CFS or , over the age of 18, with normal or corrected-to-normal vision and no known neurological disorders such as epilepsy.


@mecfs @longcovid

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From X:

Recruitment for our recent Mason-funded ME/CFS biomedical study in VIC, Australia is LIVE! Please get in touch if interested or have questions. Some more info: https://docs.google.com/document/d/1-2H8pkgqrPRG_YLuda5au0_kdH69Xktr/edit?usp=sharing&ouid=106411990730824976565&rtpof=true&sd=true
We're doing home visits for severely ill people.

@mecfs

tomkindlon,
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2/

Study now recruiting in Victoria, funded by the Mason Foundation. Using new techniques, gut microbiota, circulating cytokines and immune cell bioenergetics will be evaluated.


@mecfs

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New US research:

Phenylephrine Alters Phase Synchronization between Cerebral Blood Velocity and Blood Pressure in with

https://journals.physiology.org/doi/abs/10.1152/ajpregu.00071.2024

@mecfs

@pots

tomkindlon,
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2/

A small study on patients with compared to controls found
CO2 and Acetazolamide were ineffective, but "PE [Phenylephrine] improved neurocognitive function in ME/ patients, perhaps related to improved neurovascular coupling, cerebral autoregulation and maintenance of CBV”

@mecfs @pots

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Upcoming CDC ME/CFS webinar on Monday, May 6 includes “Deep Phenotyping of Post-Infection Syndromes and the Way Forward” with Brian Walitt MD MPH & Avindra Nath MD

https://www.cdc.gov/me-cfs/programs/meetings.html


@mecfs

tomkindlon,
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This starts in just over 3 hours wherever you are in the world


@mecfs

tomkindlon,
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3/
CDC ME/CFS Program Update has just been posted in advance of today's meeting

https://www.cdc.gov/me-cfs/pdfs/23-sec-cdc-program-update-5-3-24.pdf

#MEcfs #CFS #PwME @mecfs

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