cadence
@memoriata.bsky.social
musician and poet ~ autistic and chronically ill (ME/CFS since 2017)
they/them
they/them
This is a very exciting ME/CFS treatment trial - the first, as far as I know, to trial a drug based on a biomarker www.simmaronresearch.com/rapamycin-tr...
Rapamycin Trial — Simmaron Research
www.simmaronresearch.com
November 16, 2023 at 7:09 AM
This is a very exciting ME/CFS treatment trial - the first, as far as I know, to trial a drug based on a biomarker www.simmaronresearch.com/rapamycin-tr...
Reposted by cadence
Your usual reminder that CBT has *never* been shown to improve *actual physical symptoms* in #MECFS patients.
Self-reported well-being is often higher after CBT; but that's what CBT does -- it gets people to look at things more positively.
Actual strength, endurance, mobility etc all UNAFFECTED
Self-reported well-being is often higher after CBT; but that's what CBT does -- it gets people to look at things more positively.
Actual strength, endurance, mobility etc all UNAFFECTED
Does the effect of cognitive behavior therapy for chronic fatigue syndrome (ME/CFS) vary by patient ...
Does the effect of cognitive behavior therapy for chronic fatigue syndrome (ME/CFS) vary by patient characteristics? A systematic review and individual patient data meta-analysis
www.cambridge.org
November 6, 2023 at 4:55 PM
Your usual reminder that CBT has *never* been shown to improve *actual physical symptoms* in #MECFS patients.
Self-reported well-being is often higher after CBT; but that's what CBT does -- it gets people to look at things more positively.
Actual strength, endurance, mobility etc all UNAFFECTED
Self-reported well-being is often higher after CBT; but that's what CBT does -- it gets people to look at things more positively.
Actual strength, endurance, mobility etc all UNAFFECTED
So a new threat we with stigmatised chronic illnesses have to contend with is AI-generated "research papers" with dangerous and misleading "findings" and recommendations, that hapless doctors will not realise are fake...
November 4, 2023 at 8:09 AM
So a new threat we with stigmatised chronic illnesses have to contend with is AI-generated "research papers" with dangerous and misleading "findings" and recommendations, that hapless doctors will not realise are fake...
Reposted by cadence
It's not just that section, Brian, I think the whole review is constructed by LLMs.
November 2, 2023 at 12:35 PM
This is actually terrifying.
Alarming thread/convo.
A high-profile paper on #LongCovid contains a mystery section apparently written by AI that perpetuates unfounded ablist stereotypes, presumably skewed by LLM verbiage.
One of the authors is even listed as affiliated to an "AI lab"!
Great sleuthing by @lucibee.bsky.social
A high-profile paper on #LongCovid contains a mystery section apparently written by AI that perpetuates unfounded ablist stereotypes, presumably skewed by LLM verbiage.
One of the authors is even listed as affiliated to an "AI lab"!
Great sleuthing by @lucibee.bsky.social
There's something bothering me about this review.
Something about it is very odd.
🤔
Something about it is very odd.
🤔
November 4, 2023 at 8:06 AM
This is actually terrifying.
Huge gratitude to this record label for making so many incredible compilations available for free in bandcamp (linked is just one example, they have lots).. So helpful for people like me learning to DJ and the music is really excellent
3rdavenue.bandcamp.com/album/summer...
3rdavenue.bandcamp.com/album/summer...
November 2, 2023 at 11:38 AM
Huge gratitude to this record label for making so many incredible compilations available for free in bandcamp (linked is just one example, they have lots).. So helpful for people like me learning to DJ and the music is really excellent
3rdavenue.bandcamp.com/album/summer...
3rdavenue.bandcamp.com/album/summer...
Reposted by cadence
Please Help David Tuller, Our Champion!
Link to donate: crowdfund.berkeley.edu/project/40018
Image taken from the American ME and CFS Society November 2023 newsletter
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
Link to donate: crowdfund.berkeley.edu/project/40018
Image taken from the American ME and CFS Society November 2023 newsletter
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
November 1, 2023 at 4:49 PM
Please Help David Tuller, Our Champion!
Link to donate: crowdfund.berkeley.edu/project/40018
Image taken from the American ME and CFS Society November 2023 newsletter
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
Link to donate: crowdfund.berkeley.edu/project/40018
Image taken from the American ME and CFS Society November 2023 newsletter
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
Reposted by cadence
Lots of people know about #LongCovid but are unaware that "post-acute infection syndromes" are a recognised medical problem & have existed for centuries.
Here Yale School of Medicine outline the 4 main causal theories >> viral remnants; autoimmune responses; latent viruses; tissue damage
#MECFS
Here Yale School of Medicine outline the 4 main causal theories >> viral remnants; autoimmune responses; latent viruses; tissue damage
#MECFS
The Long History of Long COVID and Other Chronic Illnesses
The term post-acute infection syndrome refers to chronic diseases that occur after an acute viral, bacterial, or parasitic infection, including chronic Lyme and
medicine.yale.edu
November 1, 2023 at 9:56 AM
Lots of people know about #LongCovid but are unaware that "post-acute infection syndromes" are a recognised medical problem & have existed for centuries.
Here Yale School of Medicine outline the 4 main causal theories >> viral remnants; autoimmune responses; latent viruses; tissue damage
#MECFS
Here Yale School of Medicine outline the 4 main causal theories >> viral remnants; autoimmune responses; latent viruses; tissue damage
#MECFS
Reposted by cadence
In this study of patients with #SevereME in Norway:
48% had nausea hindering eating
62% had stomach pains when eating
34% had problems swallowing
#EndMalnutritioninME
www.mdpi.com/2077-0383/12...
48% had nausea hindering eating
62% had stomach pains when eating
34% had problems swallowing
#EndMalnutritioninME
www.mdpi.com/2077-0383/12...
Severe and Very Severe Myalgic Encephalopathy/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Bur...
There is a striking lack of systematic knowledge regarding the symptom burden, capacity for activities of daily living, and supportive measures for the most severely ill ME/CFS patients. The present s...
www.mdpi.com
November 1, 2023 at 11:09 AM
In this study of patients with #SevereME in Norway:
48% had nausea hindering eating
62% had stomach pains when eating
34% had problems swallowing
#EndMalnutritioninME
www.mdpi.com/2077-0383/12...
48% had nausea hindering eating
62% had stomach pains when eating
34% had problems swallowing
#EndMalnutritioninME
www.mdpi.com/2077-0383/12...
Reposted by cadence
an irregular pulse
the sound of raindrops
the bell of transience
the sound of raindrops
the bell of transience
November 1, 2023 at 3:23 PM
an irregular pulse
the sound of raindrops
the bell of transience
the sound of raindrops
the bell of transience
Reposted by cadence
This trial has funding to analyse 25000 samples but is well short.
To register/find more info, go to: decodeme.org.uk/portal
Please tell others.
This article explains why the study is important: www.healthrising.org/blog/2023/10...
#MyalgicEncephalomyelitis #DecodeME #MEcfs #CFS #PwME
To register/find more info, go to: decodeme.org.uk/portal
Please tell others.
This article explains why the study is important: www.healthrising.org/blog/2023/10...
#MyalgicEncephalomyelitis #DecodeME #MEcfs #CFS #PwME
November 1, 2023 at 1:44 AM
This trial has funding to analyse 25000 samples but is well short.
To register/find more info, go to: decodeme.org.uk/portal
Please tell others.
This article explains why the study is important: www.healthrising.org/blog/2023/10...
#MyalgicEncephalomyelitis #DecodeME #MEcfs #CFS #PwME
To register/find more info, go to: decodeme.org.uk/portal
Please tell others.
This article explains why the study is important: www.healthrising.org/blog/2023/10...
#MyalgicEncephalomyelitis #DecodeME #MEcfs #CFS #PwME
Happy halloween! Go listen to my new song: memoriata.bandcamp.com/track/cemete...
Cemetery of Hearts, by memoriata
track by memoriata
memoriata.bandcamp.com
October 31, 2023 at 2:13 AM
Happy halloween! Go listen to my new song: memoriata.bandcamp.com/track/cemete...
Finished a song for the new album today... One down or more to go
October 30, 2023 at 3:02 PM
Finished a song for the new album today... One down or more to go
This is one of the best things I've ever heard... Not even 2 minutes in and they're already somehow quoting Steve Reich
October 28, 2023 at 5:57 AM
This is one of the best things I've ever heard... Not even 2 minutes in and they're already somehow quoting Steve Reich
Reposted by cadence
Now this is interesting. They have tried to measure PEM in this sample. That's good.
They found that 50% of those whose LC resolved had PEM vs 70-75% of those who had ongoing LC.
However, 40% of those with "no covid" also reported PEM. 🚨
They found that 50% of those whose LC resolved had PEM vs 70-75% of those who had ongoing LC.
However, 40% of those with "no covid" also reported PEM. 🚨
October 25, 2023 at 11:09 AM
Now this is interesting. They have tried to measure PEM in this sample. That's good.
They found that 50% of those whose LC resolved had PEM vs 70-75% of those who had ongoing LC.
However, 40% of those with "no covid" also reported PEM. 🚨
They found that 50% of those whose LC resolved had PEM vs 70-75% of those who had ongoing LC.
However, 40% of those with "no covid" also reported PEM. 🚨
Reposted by cadence
After a brief pause, I'm ready for more invitation codes to send out to members of the chronic illness/disability communities! About 3700 codes have gone out so far. Please fill out this form to donate codes, or send it to friends in this community in need of one. forms.gle/G7kRALEvha2o...
October 21, 2023 at 3:14 PM
After a brief pause, I'm ready for more invitation codes to send out to members of the chronic illness/disability communities! About 3700 codes have gone out so far. Please fill out this form to donate codes, or send it to friends in this community in need of one. forms.gle/G7kRALEvha2o...
Reposted by cadence
5/
From: "Treatment Harms to Patients with #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome" by @david_f_marks
(an eminent academic psychologist)
opastpublishers.com/open-access-...
#MEcfs #CFS #PwME #MyalgicE
From: "Treatment Harms to Patients with #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome" by @david_f_marks
(an eminent academic psychologist)
opastpublishers.com/open-access-...
#MEcfs #CFS #PwME #MyalgicE
![Kindlon (2011) and (2017)
High rates of adverse effects have been reported with CBT and
GET by ME/CFS patients. Kindlon (2011) reviewed 10 patient
surveys from four countries found that 51per cent of respondents
(range = 28%–82%, n = 4338, eight surveys) reported GET
worsened their health, whereas 20 per cent of respondents (range
= 7%– 38%, n = 1808, five surveys) reported similar results for
CBT [9].
Kindlon (2017) also reviewed evidence that low-intensity exercise has the potential to exacerbate symptoms in CFS [10]. The
effects of exercise can persist for more than a week after exertion
e.g. gentle exercise of less than 7-minute duration can lead to
worsening of fatigue, pain, sore throat and/or general health.
Longer-term, the effects of exercise can persist beyond 24 hours.
Lapp (1997) followed 31 patients for 12 days after a maximal
exercise test and found that the average relapse lasted 8.82 days
with 22 per cent still in relapse at 12 days [10]. Kindlon (2017)
observed that: “](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:43rudsv62fuwsmnk7oppgtdy/bafkreicbmtiewf4226zdocibpjahow2abmlv63fgwjrluwltvtdm4npz3a@jpeg)
October 25, 2023 at 1:01 PM
5/
From: "Treatment Harms to Patients with #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome" by @david_f_marks
(an eminent academic psychologist)
opastpublishers.com/open-access-...
#MEcfs #CFS #PwME #MyalgicE
From: "Treatment Harms to Patients with #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome" by @david_f_marks
(an eminent academic psychologist)
opastpublishers.com/open-access-...
#MEcfs #CFS #PwME #MyalgicE
Reposted by cadence
4/
From: "Treatment Harms to Patients with #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome" by
@david_f_marks
(an eminent academic psychologist)
opastpublishers.com/open-access-...
#MEcfs #CFS #PwME #MyalgicE
From: "Treatment Harms to Patients with #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome" by
@david_f_marks
(an eminent academic psychologist)
opastpublishers.com/open-access-...
#MEcfs #CFS #PwME #MyalgicE
![Twisk and Maes (2009) A review of CBT and GET by Twisk and Maes (2009) found that CBT and GET are “not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS” (p. 284) [9]. Twisk and Maes (2009) suggested that CBT/GET are hardly more effective than non-interventions or standard medical care, but also that “many patients report that the therapy had affected them adversely, the majority of them even reporting substantial deterioration” [9]. Exertion which is almost bound to occur with GET is most likely to have a negative impact on many ME/CFS patients. Exertion produces post- exertional malaise (PEM) which decreases aerobic capacity, increases muscoskeletal pain, neurocognitive impairment, "fatigue", and weakness, and produces a slow recovery time. Twisk and Maes concluded that it is “unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful "rehabilitation therapies", such as CBT/GET”.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:43rudsv62fuwsmnk7oppgtdy/bafkreid3vllii6joqrb3d7hglvpmfv3efwwu7baf37fb6ui2xvebca6rtu@jpeg)
October 23, 2023 at 9:03 PM
4/
From: "Treatment Harms to Patients with #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome" by
@david_f_marks
(an eminent academic psychologist)
opastpublishers.com/open-access-...
#MEcfs #CFS #PwME #MyalgicE
From: "Treatment Harms to Patients with #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome" by
@david_f_marks
(an eminent academic psychologist)
opastpublishers.com/open-access-...
#MEcfs #CFS #PwME #MyalgicE
Wish I could show 14 year old me the music I'm making now that sounds exactly like the dance music I loved as a teenager but never dreamed I could replicate
October 25, 2023 at 9:49 AM
Wish I could show 14 year old me the music I'm making now that sounds exactly like the dance music I loved as a teenager but never dreamed I could replicate
Reposted by cadence
People think covid is an illness from which you get better, when covid is an illness from which you can get much much worse—I only became housebound a full year after my infection
October 24, 2023 at 12:25 PM
People think covid is an illness from which you get better, when covid is an illness from which you can get much much worse—I only became housebound a full year after my infection
Landlord propaganda of the day 🤣
October 23, 2023 at 8:29 AM
Landlord propaganda of the day 🤣
Sneak peek - I am making the most unhinged techno. Unhinged, I tell you.
October 23, 2023 at 7:37 AM
Sneak peek - I am making the most unhinged techno. Unhinged, I tell you.
When your apartment is so flimsily built that the neighbors opening their closet rattles the walls just as much as the 4.9 magnitude earthquake that happened a moment ago...
October 21, 2023 at 3:24 PM
When your apartment is so flimsily built that the neighbors opening their closet rattles the walls just as much as the 4.9 magnitude earthquake that happened a moment ago...