Tom Kindlon

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 *[email protected]

Public Key

npub1cmgnrp5tmg2d2jhmvlcc4jem3lt0rcny70vhjek0y4ddffyywazq5p7aen

NIP-05 Address

[email protected]

Profile Code

nprofile1qqsvd5f3s69a59x4ftak0uv2evacl4h3ufj08ktevm8j2kk55jz8w3qpz3mhxue69uhhyetvv9ujuerpd46hxtnfduqs6amnwvaz7tmwdaejumr0dsdceepr

Publishing to

relay.damus.io

nos.lol

Author Public Key

npub1cmgnrp5tmg2d2jhmvlcc4jem3lt0rcny70vhjek0y4ddffyywazq5p7aen

Show more details

Last Notes

2024-08-12 17:41:04

- reply

2/
There are slides and a pdf that can be easily accessed.
@npub1gxp…8dpd #mecfs

2024-08-05 00:52:57

- reply

2/
$5m for "Optimising supportive consumer and provider journeys through the postacute sequelae of COVID-19 (PASC)"

2024-08-03 19:26:19

- reply

Test
https://disabled.social/@tomkindlon/112876206707293047

2024-08-03 12:56:30

- reply

3/
They don't report it in the abstract but the mean EQ-5D score was 0.38 for ME/CFS patients (the mean of the UK population is 0.86).
#MEcfs #PwME
@npub1gxp…8dpd

2024-07-30 16:59:24

BBC Scotland - The Nine (7 mins 30
Edina Slayter-Engelsman a Dutch describes the “unbearable suffering” she had experienced living with severe #MECFS.
Also features interviews from Sonya Choudhury and Chris Ponting.
https://youtu.be/nygBLMAI9W4?si=zXmqGLnY-Sk9EzLw @npub1gxp…8dpd

2024-07-30 16:45:18

BBC Radio Scotland - (5 mins)
Edina Slayter-Engelsman describes how she felt she was "tangled in a spiders web" by severe #MECFS
Includes interview with Chris Ponting #MECFS.
https://youtu.be/3lhCGI4sQjc
@npub1gxp…8dpd

2024-07-29 21:29:26

- reply

2/
I think this piece would have been strengthened if it had also highlighted the poor results from the NHS “CFS/ME” rehab clinics with regard to work and recovery as I did here
https://threadreaderapp.com/thread/1313505704125313029.html
#MEcfs #PwME
@npub1gxp…8dpd

2024-07-29 20:24:40

- reply

2/
“Autonomous nervous symptoms, transient DBP rise with increasing HR after standing, and endocrine dysfunctions are helpful for detecting OI related to long COVID."
#PASC #orthostaticintolerance
@npub18fz…hy22 #longcovid

2024-07-29 15:02:28

"There is no help – final message of woman with ME"
https://www.bbc.com/news/articles/c51y7zq4pgno
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@npub1gxp…8dpd

2024-07-29 00:57:48

- reply

2/
This Spanish study suggests that lipid profiles in ME/CFS are linked to disrupted circadian rhythms and sleep patterns, possibly due to endothelial dysfunction.
#MEcfs #PwME
@npub1gxp…8dpd

2024-07-28 00:37:09

May 2024 International Research And Advocacy Roundup
https://www.emerge.org.au/news/may-2024-international-research-and-advocacy-roundup/
“Our International Roundup provides a brief snapshot of some of the ME/CFS research funding, clinical care and advocacy actions around the world in the last few months”
#MEcfs #PwME #CFS @npub1gxp…8dpd

2024-07-27 13:39:22

- reply

2/
“the mean time to diagnosis was 14 years.”
Way too long, totally unacceptable.
#MEcfs #PwME
@npub1gxp…8dpd

2024-07-26 14:19:25

- reply

4/
One of the references:
1988. UK. BBC Horizon - Monday 27th June. Episode title is ‘Believe M.E.’
https://youtu.be/8HW1SzHqMhs?si=LQrV8cA2GFu9mflX
#PwME #MyalgicEncephalomyelitis
@npub1gxp…8dpd

2024-07-23 00:55:18

Neuropsychological functioning after COVID-19: minor differences between individuals with and without persistent complaints
https://www.tandfonline.com/doi/full/10.1080/13854046.2024.2379508
@npub18fz…hy22
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
#CovidBrain
1/

2024-07-21 23:39:16

- reply

2/
“(Contd) Carbohydrate metabolism showed alterations in both conditions, while amino acid metabolism was predominantly affected in schizophrenia alone."
#Covid19
@npub1ua6…gx9n

2024-07-21 15:16:01

- reply

5/
"Sean O’Neill is dreading his daughter’s inquest but hopes it will show the nation how people with the condition are routinely stigmatised and ignored by the NHS."
#MyalgicEncephalomyelitis #PwME
@npub1gxp…8dpd #mecfs

2024-07-21 14:18:40

A sample letter (which of course can be adjusted) that could be used to write to a neighbour to explain your environmental intolerances.
From MCS Aware
https://mcs-aware.org/wp-content/uploads/2024/05/Letter-to-give-to-neighbours-MCS-And-EHS-2024.pdf
#MCS [email protected] #MultipleChemicalSensitivities #MultipleChemicalSensitivity
https://assets.disabled.social/media_attachments/files/112/824/430/093/954/676/original/dd6acdcb04dd5e84.png

2024-07-21 02:23:03

"The potential negative impacts of pet guardianship on the guardian, a scoping review"
https://link.springer.com/article/10.1007/s44338-024-00014-1
I've seen articles focus on the possible benefits but to have a considered view, possible negative effects also need to be considered.
#Pets #Pet
https://assets.disabled.social/media_attachments/files/112/821/610/485/048/289/original/e125e1408f6c18c7.png

2024-07-20 13:39:27

- reply

2/
“I hope the inquest will show that ME is very real, that it can be fatal and that there must be a change in medical culture, medical education and NHS provision to recognise that.”
#MyalgicEncephalomyelitis
@npub1gxp…8dpd #mecfs

2024-07-19 21:13:29

- reply

4/
“Javid told The Times: ‘For too long, people with ME have been left behind. Patients and families are too often overlooked and the condition goes undiagnosed”
#MyalgicEncephalomyelitis
@npub1gxp…8dpd

2024-07-17 01:14:48

USA Brain Donation for ME/CFS research
https://www.meresearch.org.uk/usa-brain-donation-for-me-cfs-research/
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @npub1gxp…8dpd

2024-07-09 01:15:21

- reply

3/
“The present proof of concept now requires further studies to identify the factors involved in this newly understood mechanism, following SARS-CoV-2 exposure."
#Covid #LongCovid

2024-07-08 23:24:24

- reply

2/
"our study establishes that patients with LCS [ #LongCovid Syndrome] exhibit lower absolute and relative HRV values compared to controls, with peak VO2max emerging as a significant mediator in this relationship."
#PostCovid
@npub18fz…hy22

2024-07-03 03:35:15

- reply

@npub1ms4…za2g
Yes, I've picked this up 🙁

2024-07-02 19:42:10

Plastic-Free July
From the free July 2024 e-newsletter of MCS Aware. Sign up here: https://mcs-aware.org/latest-newsletter/
Links in image:
https://mcs-aware.org/articles/plastic-free-july/
https://www.youtube.com/watch?v=ByayHG5CscE
#MCS #PlasticFree
https://assets.disabled.social/media_attachments/files/112/718/115/480/276/899/original/3d1b4bc5a979496f.png

2024-06-22 19:42:19

ME Research UK:
Read more about this newly funded study on our website: http://bit.ly/wust068
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @npub1gxp…8dpd
https://assets.disabled.social/media_attachments/files/112/661/499/299/179/648/original/7a38ebc0cc03e8da.jpg

2024-06-21 19:58:55

(UK)
CureME - UK ME/CFS Biobank
Join our HHV-6 Study as a healthy control participant!
Just 6 more individuals needed to complete our cohort. Support #pwME by collecting saliva samples and completing weekly questionnaires from home. Apply now https://bit.ly/3Vnx2fm
#MECFS @npub1gxp…8dpd

2024-06-19 22:21:34

He added that there is a (small) typo. She said "how to solve this**"
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @npub1gxp…8dpd
https://assets.disabled.social/media_attachments/files/112/645/136/872/955/758/original/7049f47371561c4f.png

2024-06-16 17:24:31

- reply

2/
"Ladyzhets recently wrote a new article about RECOVER, published in The Sick Times
as well as STAT, based on documents she received from NIH through the Freedom of Information Act. We spoke the other day about what she found out".
#LongCovid
@npub18fz…hy22

2024-06-15 13:49:05

- reply

@npub1t06…fnv9 There are brackets in the link which I think may confuse the software.
This should work:
https://t.ly/J3ivM

2024-06-12 17:38:59

- reply

2/
“Among 60 randomized controlled trials, the overall fatigue severity of the 7,088 participants with ME/CFS was 77.9 out of 100.”
#PwME #MEcfs #CFS
@npub1gxp…8dpd

2024-06-12 15:12:46

UniteToFight 2024:
Videos are starting to become available of the Long Covid and ME/CFS conference held online on 15th and 16th May 2024.
https://www.youtube.com/@UniteToFight2024/videos?view=0&sort=dd&shelf_id=3
#LongCovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
https://assets.disabled.social/media_attachments/files/112/601/040/811/857/412/original/7dd29c7f79348356.png

2024-06-12 02:59:16

- reply

2/
This thorough Guardian article tells the story of Lucy Keighley and also presents a typical Long Covid patient story based on responses the Guardian has received from readers.
#LongCovid #PwLC @npub18fz…hy22

2024-06-07 01:39:12

- reply

@npub1ezn…3rul
Sorry to hear you are disappointed with my posts here. I will reflect on your feedback. Best of luck in the future.

2024-06-03 03:27:39

- reply

3/
Conversely, IgG transfer from the third subgroup, which are characterized by enriched skeletal and cardiac muscle proteome profiles, reduced locomotor activity in mice without affecting their motor coordination."

2024-06-02 17:05:18

- reply

3/
Recording of talk in January 2024 by researcher’s supervisor, Jihandi Wan: “Impaired oxygen sensitivity of red blood cells from ME/CFS”
youtu.be/Uei0XjFxXSM?t=2h28m30s
#MEcfs #CFS #PwME
@npub1gxp…8dpd

2024-06-02 14:45:57

- reply

2/
“(Contd) In addition, where appropriate and where consent has been given, we can also re-contact participants."
This opportunity closes end of Aug 2025.
#CFS
@npub1gxp…8dpd

2024-06-01 15:27:49

Online ME/CFS Research Workshops in June & July – attendance invitation
https://www.meresearch.org.uk/research-workshops-attendance-invitation
@npub1gxp…8dpd
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

2024-06-01 00:34:27

- reply

@npub1gx5…teuu Thank you 😊

2024-05-31 20:41:27

- reply

@npub1tw5…y72u
Many would consider it not worth while to invest time in posting regularly on a social media platform if not many people are reading your messages.

2024-05-31 17:58:06

- reply

2/
"While our results are not generalizable to the entire working age population, they provide new insights on the relationship between chronic autonomic dysfunction after COVID19 & work ability & may help health professionals in the field of occupational health to mitigate the risk of unemployment after COVID”

2024-05-30 03:25:55

- reply

2/
"It [the researcher toolkit] provides an important overview of: UK government research funding opportunities; guides to embedding patient and public involvement; resources on developing high quality proposals and more"
#MEcfs #CFS #PwME @npub1gxp…8dpd

2024-05-25 22:55:38

- reply

A little reminder about this webinar which is on this Tuesday.
#MEcfs #CFS #PwME
@npub1gxp…8dpd

2024-05-24 18:24:51

A ME/CFS Awareness Day event was organized in Hungary. Several ME/CFS videos were shown and discussed. The event was video-recorded and can be watched on Facebook.
https://www.facebook.com/share/v/fZ8Zmy6jrEGgJSEd/?mibextid=KsPBc6
#MEcfs #CFS #PwME #krónikusfáradtságszindróma @npub1gxp…8dpd

2024-05-19 23:45:39

- reply

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. 😀

2024-05-19 22:07:36

- reply

2/
Thanks also to Anna the overall coordinator of #BlueSunday #TeaPartyForME for ME charities around the world.
Some people have given me cash donations off-line but I don't have a final total yet.
#PwME #MEcfs
@npub1gxp…8dpd

2024-05-16 18:09:31

- reply

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 #CFS #PwME
@npub1gxp…8dpd

2024-05-14 17:29:35

- reply

2/
"In combination with the reported amyloidogenic potential of several regions of the SARS-CoV-2 S protein and viral accessory proteins, there is a strong potential for amyloidosis to contribute to the systemic damage caused by COVID-19."
#Covid_19 #LongCovid

2024-05-12 03:57:20

#May12 #May12th #MEAwarenessDay @npub1gxp…8dpd
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
https://assets.disabled.social/media_attachments/files/112/425/630/065/185/708/original/25e41f0d0c9c0ae2.jpg

2024-05-11 18:53:08

Acronyms explained
#MEcfs #CFS #PwME
@npub1gxp…8dpd
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
https://assets.disabled.social/media_attachments/files/112/423/488/564/519/228/original/5d3ff5d0126b914f.jpg

2024-05-07 03:01:15

- reply

I've heard from parents from 3 separate families who were pleased with their appointments with Dr Speight in Dublin today.
#MEcfs #CFS #PwME
@npub1gxp…8dpd

2024-05-06 20:56:03

- reply

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 @npub1gxp…8dpd

2024-05-06 17:52:03

- reply

This starts in just over 3 hours wherever you are in the world
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@npub1gxp…8dpd

2024-05-06 16:33:40

- reply

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 #PwME #CFS
@npub1gxp…8dpd

2024-05-06 02:07:17

- reply

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 #CFS
@npub1gxp…8dpd

2024-05-06 02:05:06

- reply

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/
#PwME
@npub1gxp…8dpd

2024-05-04 19:07:06

Research Digest Issue 105 from Emerge Australia
https://www.emerge.org.au/researchdigest/research-digest-issue-105/
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @npub1gxp…8dpd
https://assets.disabled.social/media_attachments/files/112/383/906/599/685/122/original/4b3136102a1769ce.png

2024-05-04 16:06:23

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 #PwME #CFS @npub1gxp…8dpd
https://assets.disabled.social/media_attachments/files/112/383/184/160/170/709/original/5545bf26351daf8c.png

2024-05-03 19:38:56

ME Research UK – April 2024 e-newsletter
https://www.meresearch.org.uk/me-research-uk-april-2024-e-newsletter/
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @npub1gxp…8dpd
https://assets.disabled.social/media_attachments/files/112/378/373/836/371/194/original/7490d415a86cfce0.png

2024-04-29 23:17:08

- reply

@npub1wna…a85t Still works for me

2024-04-25 17:33:08

ME Research UK:
As well as her ME Research UK-supported work on mitochondrial function, Dr Sarah Annesley at La Trobe University has also been involved in a study measuring the characteristics of lipid droplets in fibroblasts from people with ME/CFS:
https://www.meresearch.org.uk/do-lipid-droplets-play-a-role-in-me-cfs/
#MEcfs #CFS #PwME @npub1gxp…8dpd

2024-04-25 00:22:28

Extracts from Irish Daily Mail (and probably UK Daily Mail) April 23, 2024:
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @npub1gxp…8dpd
https://assets.disabled.social/media_attachments/files/112/328/528/189/740/023/original/2a53a5a21c79242f.png

2024-04-21 15:54:15

- reply

2/
The authors are Arild Angelsen, a board member of the Norwegian ME Association and a professor at the School of Economics and Business at Norwegian University of Life Sciences, and Trude Schei, assistant secretary general of the Norwegian ME Association.
#PwME #CFS
@npub1gxp…8dpd

2024-04-21 15:47:18

- reply

2/
Includes a letter to Sanders from Todd Davenport PhD urging the inclusion of people with ME/CFS and other infection-associated chronic conditions in the legislation for #LongCovid funding.
#PwME #MEcfs
@npub1gxp…8dpd

2024-04-20 18:33:00

New
"Two 4-week dietary interventions and optimised medical treatment reduced the severity of IBS symptoms, with a larger effect size in the diet groups. Dietary interventions might be considered as an initial treatment for patients with IBS"
https://www.thelancet.com/journals/langas/article/PIIS2468-1253(24)00045-1/abstract
#IBS @npub1h6k…gryw
1/

2024-04-16 00:42:50

“I have a great update on our leukocyte "brain infiltration" study. The FDA gave us permission to start scanning chronic fatigue patients! Check out the video for more details” Jarred Younger on Facebook today
https://www.youtube.com/watch?v=VImABXhAP8A
#MEcfs #PwME #CFS @npub1gxp…8dpd

2024-04-15 18:53:07

- reply

@npub1sss…n6rg ⬆️

2024-04-15 17:01:54

- reply

3/
The survey reveals that long delays in ME/CFS diagnosis from disease onset are common, averaging 6.8 years. (There is some variation between countries).
#MEcfs #CFS #PwME
@npub1gxp…8dpd

2024-04-15 14:17:59

- reply

2/
Oops, it should say Sijunzi not Ijunzi
@npub1gxp…8dpd

2024-04-15 14:16:22

- reply

2/
Oops, it should say Sijunzi not Ijunzi
@npub1gxp…8dpd

2024-04-10 17:58:49

- reply

2/
"physical symptoms and cognitive complaints in #LongCOVID had previously been attributed to the psychological trauma associated with the aftermath of the health crisis, rather than impairment of the central nervous system”

2024-04-09 16:56:15

- reply

2/
She asks whether ME/CFS is "more accurately described as a spectrum of post-acute infectious syndromes".
#PwME #MEcfs #CFS
@npub1gxp…8dpd

2024-04-09 13:52:31

- reply

2/ @npub1sss…n6rg ⬆️⬆️

2024-04-07 13:49:01

- reply

7/
“How does one fight for their illness to be taken seriously when people hear the term ‘fatigue’ and think it's an experience they can contextualize?”
#MEcfs #PwME
@npub1gxp…8dpd

2024-04-06 19:59:49

- reply

4/
"The very term "chronic fatigue" undermines the severity of the illness, painting an inaccurate picture of cumbersome burnout, as opposed to the debilitating reality, which leaves many bed-ridden or requiring a wheelchair."
#MECFS #pwME
@npub1gxp…8dpd

2024-04-06 18:46:35

- reply

3/
"I'm trying my best to prevent further decline until research can catch up to the reality that millions of us have our lives on hold until we can access proper treatment and care."
#MECFS #pwME
@npub1gxp…8dpd

2024-04-05 16:37:24

- reply

3/
Oops, I forgot to give the link to the original post on Facebook which is a public post so can be shared:
https://www.facebook.com/kathryntwinn.48/posts/pfbid0KQ6iUxhRJp3tBBUrzKM1nfEEQivRRCpiPQXabvJHS8quWsLEA9FF5a7SgqUeNEq4l
@npub1gxp…8dpd

2024-04-04 21:17:34

Recording of sympathetic 5-minute clip from Channel 4 news tonight (a national UK station)
https://youtu.be/3bPNjc4dRRs?si=n37MHuwE4nRXsW-n
Thanks to Jo Bruce & the #DecodeME team including Chris Ponting
#MEcfs #PwME #c4news @npub1gxp…8dpd

2024-04-04 19:41:17

(UK)
From Andy:
“We believe that, unless the planned programming changes, Channel 4 news will have another section on ME/CFS tonight which will, in part, include reporting on DecodeME”
https://www.s4me.info/threads/uk-decodeme-updates-was-recruitment-thread.29463/page-39#post-524939
#PwME #MEcfs #PwME @npub1gxp…8dpd

2024-04-03 14:08:28

- reply

2/
Dr Faghy has now told me the paper is going to be made open access.
@npub1gxp…8dpd @npub18fz…hy22 #mecfs

2024-04-01 18:28:15

- reply

2/
"As part of this study, we introduced an updated platform and two applications, ME-CFSTrackerApp, and LexiTime, facilitating real-time symptom tracking and enhancing physician-patient communication."
#PwME #MEcfs #CFS
@npub1gxp…8dpd

2024-03-30 13:58:33

- reply

@npub1f9j…uvp9 Thanks, have changed

2024-03-29 17:47:25

ME Research UK – March 2024 e-newsletter
https://www.meresearch.org.uk/me-research-uk-march-2024-e-newsletter/
#MEcfs #CFS #PwME @npub1gxp…8dpd

2024-03-27 22:00:32

- reply

4/
Note this #MEcfs study
“After IM, no relationship was found between joint hyperflexibility and the development of ME/CFS.”
https://www.clinicaltherapeutics.com/article/S0149-2918(24)00006-7/abstract
@npub1gxp…8dpd

2024-03-26 16:15:32

- reply

3/
“(Contd) These parameters thus hold the greatest potential for quantitatively measuring fatigue in representative diseases in real-life conditions, e.g., with digital wearable technologies."
@npub1gxp…8dpd

2024-03-26 13:50:10

- reply

2/
That is the last of the anniversaries of my paper publications for a while
@npub1gxp…8dpd

2024-03-25 16:53:53

- reply

2/
“(Contd) and the wider problem of the same views impacting research at NIH, including the intramural study, with Walitt's invention of the term 'effort preference'”
#MyalgicE #CFIDS
@npub1gxp…8dpd

2024-03-25 16:41:52

- reply

2/
"It is a matter of urgency for Australia to update its clinical guidelines for ME/CFS, to ensure Australian ME/CFS patients have access to the best possible care, based on current understanding of the disease and latest evidence."
#PwME #MEcfs #PwME
@npub1gxp…8dpd

2024-03-25 15:33:45

“A million dollar industry of wasted research”
https://melivet.com/2024/03/17/a-million-dollar-industry-of-wasted-research/
Patient advocate Nina E. Steinkopf has uncovered several unacceptable aspects concerning a Danish study on adolescents with so-called "multisystem functional somatic disorders".
#MEcfs @npub1gxp…8dpd

2024-03-25 13:02:45

- reply

@npub1a32…gp35 Thank you very much 😊 @npub1gxp…8dpd

2024-03-25 00:46:56

- reply

3/
In case it is of interest to anyone, the 34 verbal endorsements that people & groups generously wrote in support of an application for me to get an honorary degree from TCD can now be read here:
https://www.s4me.info/threads/tom-kindlon-nominated-for-an-honorary-degree-at-trinity-college-dublin.37428/#post-520763
I’m honoured to get such support even if no degree was awarded
@npub1gxp…8dpd #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

2024-03-24 16:15:17

- reply

2/
Llewellyn King interviews the academic and prize-winning author Nora Gold who has written the book "In Sickness and In Health" about her own struggle with ME.
#MEcfs #PwME
@npub1gxp…8dpd

2024-03-24 16:08:56

- reply

2/
Millie wrongly got sectioned after being admitted to hospital in order to have a feeding tube fitted. Her mother and primary caregiver has been banned from visiting her and another family member says Millie "has declined massively in hospital"
#SevereCFS
@npub1t6l…29am @npub1gxp…8dpd #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

2024-03-24 16:05:49

Byline Times: 'A Rollercoaster Of Awful Emotions': Family Speaks Out for NHS Overhaul to Prevent Deaths of Severely Ill ME Patients
https://t.ly/6R73W
The heartbreaking & currently ongoing critical case of #severeME sufferer Millie McAnish
#SevereMEcfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME @npub1t6l…29am #severecfs
1/

2024-03-24 16:00:04

- reply

2/
“(Contd) Often, they learnt the hard way that pushing themselves beyond their limits would only cause them to crash later."
@npub18fz…hy22
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
@npub1ua6…gx9n #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @npub1uw2…pmne #novid #CovidIsNotOver #CovidBrain

2024-03-24 15:57:21

Nature:
'Four years on: the career costs for scientists battling long COVID'
https://t.ly/8KCOt
"Many high-achieving researchers with #longCOVID say that one of their biggest struggles is the loss of their identities that had been pegged to their cognitive abilities and productivity”
@npub18fz…hy22 #PwLC #PostCovidSyndrome #LC #PASC #postcovid
@npub1ua6…gx9n #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @npub1uw2…pmne #novid #CovidIsNotOver #CovidBrain @npub1j92…6nfj
1/

2024-03-24 15:03:27

New video where Jarred Younger PhD says he is moving from local to remote clinical trials [within the US].
"I already have an ongoing remote trial for #GulfWarIllness and hope to expand to #fibromyalgia, #LongCOVID, and #MECFS"
https://www.youtube.com/watch?v=KeGlH3oEjTM
@npub1gxp…8dpd
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @npub18fz…hy22
#LongCovid #PwLC @npub1pt2…cd4k
#Fibromyalgia #Fibro #FMS #FM #GulfWarSyndrome #GulfWarIllness #GWI
https://assets.disabled.social/media_attachments/files/112/151/016/317/765/994/original/0b1f318c3a32ea9d.png

2024-03-24 14:53:00

- reply

2/
From: ME/CFS, Long COVID and School (Emerge Australia)
https://www.emerge.org.au/your-child-or-young-person-with-me-cfs-and-school/
#MEcfs #CFS #PwME #LongCovid #LongCovidKids @npub1gxp…8dpd @npub18fz…hy22
https://assets.disabled.social/media_attachments/files/112/150/989/421/140/589/original/f22f1a2e7a70eb44.png

2024-03-24 03:00:06

ME/CFS, Long COVID and School
https://www.emerge.org.au/your-child-or-young-person-with-me-cfs-and-school/
I haven't read this myself so far.
#MEcfs #CFS #PwME #LongCovid #LongCovidKids @npub1gxp…8dpd @npub18fz…hy22
https://assets.disabled.social/media_attachments/files/112/148/179/602/170/560/original/f7116e158cb035de.png

2024-03-23 22:06:11

- reply

2/
"The mission of the 501(c)3 #NotJustFatigue is to speak the truth about ME/CFS through creative content that’s deeply personal and unapologetically emotional..."
https://www.notjustfatigue.org/about
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome @npub1gxp…8dpd
https://assets.disabled.social/media_attachments/files/112/147/031/349/201/568/original/3d01a23750d9a02e.png