@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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Katie Johnstone:

I did a presentation on BACME, the British Association of Clinicians in . BACME has great influence on the treatment of people with ME, yet they cling to outdated & harmful ideas.

https://youtu.be/9_Ee7HGd1Ng?si=UqGx_OA832vTxaTv

I haven’t watched so far but has seen some praise for it

@mecfs

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,
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2/

It highlights failures of BACME to fully update their materials to comply with NICE guidelines, and failure of clinics run by members of BACME to move away from harmful past practices.

"Moreover, current cases of the NHS neglecting people living with very severe ME are being exacerbated due to the NHS trusts claiming they are following BACME guidance – not NICE guidelines."

The letter is available for added signatures and comments.


@mecfs

tomkindlon, to mecfs
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New from Germany

"Predictors of Postviral Symptoms Following Epstein-Barr Virus-Associated Infectious Mononucleosis in Young People"

https://www.medrxiv.org/content/10.1101/2024.05.17.24307333v1

"A clinical history of immune dysregulation [&] distinct severe IM symptoms might predict protracted post-viral disease"

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs_de

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 #CFS #PwME @mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
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

1/

tomkindlon,
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2/
Thanks also to Anna the overall coordinator of for ME charities around the world.

Some people have given me cash donations off-line but I don't have a final total yet.


@mecfs

tomkindlon,
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3/

One of my nephews and his dad made a plate of brownies. My nieces and nephews started on them early but we just about managed to make it look acceptable by having four left by the photo. 😀

tomkindlon,
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5/

I can now announce we’ve reached €500 from for the Irish ME/CFS Association @IrishMECFSAssociation

Pleased to help raise this for the Association’s important work.

@mecfs

tomkindlon, to mecfs
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New preprint:

Epidemiology of among individuals with self-reported in British Columbia, Canada, and their health-related quality of life

https://www.medrxiv.org/content/10.1101/2024.05.16.24307437v1

@mecfs

tomkindlon, to mecfs
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A series of online workshops are running this summer for researchers, health professionals and people with ME, with the aim to raise the profile of #MECFS clinical research, increase collaboration, attract new researchers & formulate research priorities

https://meassociation.org.uk/2024/05/research-working-together-to-find-answers-to-me-cfs/

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME

tomkindlon, to mecfs
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The UK ME Association:

"We have engaged a distribution company to ensure leaflets & posters are displayed in 3,000 GP surgeries in the UK. This will mean that we will know material is on display & that as leaflets are used, they can be replaced, & usage monitored"

https://meassociation.org.uk/2024/05/me-association-statement-improving-healthcare-for-people-with-me-cfs-and-long-covid/

@mecfs

tomkindlon, to coronavirus
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(pay wall)
"Parents of children with #longCovid 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
#PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain
@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #SARSCoV2 @novid #novid #CovidIsNotOver
#longCovidKids #LCKids

tomkindlon, to mecfs
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Thanks to my mum for getting everything ready for our family on (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

tomkindlon, to mecfs
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New 4-minute video:
"#MyalgicEncephalomyelitis (ME/CFS) Awareness - ‘What Was I Made For?'"

https://youtu.be/ZjwHWpDR_wM

A cover of Billie Eilish’s ‘What Was I Made For?’, combined with
information to raise awareness for Myalgic Encephalomyelitis (ME/CFS)

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

tomkindlon, to HR
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Work and vocational rehabilitation for people living with long covid

https://www.bmj.com/content/385/bmj-2023-076508

"For some people, disabling symptoms lead to complete inability to work. In less extreme cases, “work instability,” which is a mismatch between patients’ functional abilities and the demands of their work, can threaten employment if not addressed."

Hashtags:
@longcovid


@covid19

tomkindlon, to longcovid
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Cardiopulmonary Exercise Testing in Children With : A Case-controlled Study

https://t.ly/Wb1ps

"Children with have a reduced VO2 peak […], abnormal cardiovascular efficiency (VO2/HR% pred), pathological VE/VCO slope […], and abnormally reduced slope of VO2 work" "48% of the LC patients had a suspicious phenotype for pulmonary hypertension."

Hashtags:
@longcovid

tomkindlon, to mecfs
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🧵
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,
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2/

In this study, having previously received an functional somatic syndrome diagnosis such as CFS was associated with female sex and poor health-related quality of life. No association was found for health anxiety, kinesiophobia and physical activity.

@mecfs @fibromyalgia @ibs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Looking forward to our family blue Sunday [coffee morning] event this Sunday in aid of the Irish ME/CFS Association.

https://www.idonate.ie/event/bluesunday2024fortheirishmecfsassociation @IrishMECFSAssociation

Other worthy charities also taking part.

@mecfs

tomkindlon, to mecfs
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Interview by David Tuller DrPH with Co-Organizator of Next Week's Unite To Fight Long Covid & ME/CFS Conference

https://virology.ws/2024/05/08/trial-by-error-interview-with-co-organizator-of-next-weeks-unite-to-fight-long-covid-conference/

Tuller speaks with Marco Wetzel, one of the five German #LongCovid patients who organised the conference.

@mecfs_de #UniteToFight @mecfs

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

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

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

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 #PwME #CFS @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
1/

tomkindlon,
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2/

Dr Audrey Ryback (who is funded by Action for ME) and Charlie Hillier plan to replicate with a larger sample work by Fluge and Mella who found something in serum that changed the behaviour of healthy lab-grown muscle cells.


@mecfs

tomkindlon,
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3/

They will use the Seahorse anlayser to look at glycolysis and mitochondrial respiration. Using a stain and microsocopy, they will look for the mitochondrial fragmentation that Prusty saw, and will also investigate how serum might affect cell function.


@mecfs

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