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Tom Kindlon · @tomkindlon
779 followers · 2097 posts · Server disabled.social
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#LongCovid #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
779 followers · 2097 posts · Server disabled.social
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On this page you will find ongoing ME/CFS clinical trials looking for participants

ammes.org/clinical-trials/

@mecfs

#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
778 followers · 2093 posts · Server disabled.social
ScienceAlert - New Blood Test For Chronic Fatigue Syndrome Has 91% Accuracy

#chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
778 followers · 2092 posts · Server disabled.social
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New level of eccentricity unlocked 😜

I like getting some “outside time” but sometimes rain may be coming so have started to lie under the table

[As I said before, with my ME I’m too ill to go for walks]

@mecfs

#mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome

Last updated 1 year ago
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Irish ME/CFS Association · @IrishMECFSAssociation
182 followers · 1900 posts · Server mastodon.ie
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#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice #LongCovid #pwLC #postcovidsyndrome #PostCovid #postCOVID19 #lc

Last updated 1 year ago
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Irish ME/CFS Association · @IrishMECFSAssociation
182 followers · 1899 posts · Server mastodon.ie
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4/

We got this email today which confirms the competition is still ongoing.


@mecfs

#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
778 followers · 2084 posts · Server disabled.social

Medically Documenting Disability in / (ME/CFS) Cases (2019)

shorturl.at/hERST

Coauthored by the lawyer who prevailed on the disability case of @brianvastag disability case and a clinician who has done many ME/CFS disability cases

@mecfs

Probably of use to some with @longcovid

#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #mye #me #millionsmissing #cfsme #cfids #LongCovid #pwlc #postcovidsyndrome #lc #PostCovid

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
778 followers · 2083 posts · Server disabled.social

#spoonie #chronicillness #fatigue #fatiguetips #chronicfatigue #chronicfatiguesucks #pacing #rest #resting #mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye #me #millionsmissing #cfsme #LongCovid #pwlc #postcovidsyndrome #lc #PostCovid

Last updated 1 year ago
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Irish ME/CFS Association · @IrishMECFSAssociation
182 followers · 1876 posts · Server mastodon.ie
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September 19

batemanhornecenter.org/event/o

3 PM EDT/8 PM GB & Ireland

Find the time in your time zone here:
timeanddate.com/worldclock/fix

Topic: Let's Talk about What Works

Support Group Format

The first 30-minutes will focus on a predetermined topic followed by a general discussion. Support groups are designed to include people with , , , etc.

@mecfs
@longcovid

#mecfs #fm #LongCovid #myalgicencephalomyelitis #ChronicFatigueSyndrome #cfs #pwme #pwLC #postcovidsyndrome #PostCovid #postCOVID19 #lc

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
778 followers · 2081 posts · Server disabled.social
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From the Solve ME/CFS Initiative:

Our flagship research and advocacy journal, The Chronicle, has arrived! This special edition features key resources from our website that community members can utilize as they navigate their journeys with or .

Click to read: solvecfs.org/wp-content/upload

@mecfs

#mecfs #LongCovid #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #cfsme #cfids #seid #NeuroME

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
777 followers · 2075 posts · Server disabled.social
Science for ME - Patient and Public Involvement opportunities in ME/CFS and other research

UK Patient & Public Involvement (PPI) in ME/CFS research

An ME/CFS-related Immune Research Project based at Imperial College is looking to recruit 2 PPI members for an initial scoping call. The proposal is not currently funded. If the grant is awarded then there will be quarterly online meetings and some remuneration

From @CGATist

shorturl.at/gsDM3

@mecfs @s4me

#mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
777 followers · 2070 posts · Server disabled.social

The German government agency BMBF has announced new funding for the "promotion of interdisciplinary networks for research into the pathomechanisms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)".

English-language discussion of this
s4me.info/threads/german-gover with German link

@mecfs_de @mecfs

#mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
777 followers · 2069 posts · Server disabled.social

Bekanntmachung

Datum:
01.09.2023 - 11.12.2023
Richtlinie zur Förderung interdisziplinärer Verbünde zur Erforschung der Pathomechanismen von /#ChronischemFatigueSyndrom (ME/CFS), Bundesanzeiger vom 01.09.2023

bmbf.de/bmbf/shareddocs/bekann

@mecfs_de @mecfs

#myalgischerenzephalomyelitis #mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
777 followers · 2069 posts · Server disabled.social
DecodeME - FAQs - DecodeME

2/

"4,000 spit kits have been sent out and not yet returned. If you still have yours, please try to return it soon. We understand producing a sample can be tricky, see our FAQ for advice: rb.gy/om2il Every sample returned strengthens the results of our research."

@mecfs

#decodeme #mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
777 followers · 2067 posts · Server disabled.social


Many more UK people with ME/CFS are needed for this large genetic study. All severity levels can take part as participation is from home

Questionnaires can be filled in on paper or online, and saliva samples for DNA extraction are sent by post. The target is 25000 DNA samples, incl. 5000 diagnosed with ME/ following infection

decodeme.org.uk/portal/

@mecfs

1/

#decodeme #cfs #COVID19 #pwlc #lc #mecfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
777 followers · 2065 posts · Server disabled.social

UK ME Association Advertising Standards: Chrysalis Effect cannot claim ME/CFS recovery!

"The ME Association had made a complaint to the Advertising Standards Authority (ASA) relating to recovery claims made by the Chrysalis Effect Ltd. on its website in regard to ME/CFS. The ASA issued its ruling yesterday, and upheld the complaint."

shorturl.at/jtwFJ

@mecfs


#mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye #me

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
777 followers · 2065 posts · Server disabled.social

8/

"It’s discouraging and isolating, especially when you feel that you can’t make plans simply because you do not know that you’ll be able to carry them out."

@chronicillness @spoonies @mecfs @longcovid


#chronicillness #chroniclife #chronicpain #spoonielife #ChronicIllnesses #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #LongCovid #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
777 followers · 2063 posts · Server disabled.social

Canada - Quebec INESSS, the body in charge of medical guidelines and recommendations, published a set of documents in April 2023 for the clinical management of ME/CFS. There are three surveys (in French) asking for feedback on the three main documents.

shorturl.at/dgjvK

@mecfs

#sfc #syndromedefatiguechronique #encephalomyelitemyalgique #em #mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye #me #millionsmissing #cfsme #cfids

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
777 followers · 2061 posts · Server disabled.social

Petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review"

The number of supporters by today has reached over 5,000 people from 57 countries. Over 300 added comments, many telling of their experience of long term harm from exercise therapy.

Link with supporting information:
shorturl.at/inopJ

@mecfs

#mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome

Last updated 1 year ago
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Anna · @halcionandon
97 followers · 150 posts · Server disabled.social

Please help me find a or any willing to prescribe patches (or dose equivalent) within 13 days in

Refused meds by GP who promised to prescribe until I found a new GP (he dropped me bc my case is too complex). Changed his mind! Now have 13 days to find any doctor to write a script or agony & no control.

Time running out fast!😫

appreciated!


@chronicpain @mecfs

@longcovid @chronicillness

#gp #doctor #fentanyl #melbourne #australia #withdrawal #pain #boosts #chronicpain #MedMastodon #pwme #pwlc

Last updated 1 year ago
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