Ben H
@benhmecfs.bsky.social
ME/CFS patient advocate, Open Medicine Foundation science correspondent. Bedbound. Former: exercise physiology, biochemist in training, athlete-Powerlifter, PT, Gym Manager. Jazz grad/Musician. F1/Boxing.
Had to switch doctors and the first thing that is asked/insinuated is essentially a psychological profile…for M.E.
Swerved that shit like Neo.
It’s still happening, in spite of the new guidelines…not that I am surprised.
#MECFS #pwME #MillionsMissing
Swerved that shit like Neo.
It’s still happening, in spite of the new guidelines…not that I am surprised.
#MECFS #pwME #MillionsMissing
November 28, 2023 at 7:39 PM
Had to switch doctors and the first thing that is asked/insinuated is essentially a psychological profile…for M.E.
Swerved that shit like Neo.
It’s still happening, in spite of the new guidelines…not that I am surprised.
#MECFS #pwME #MillionsMissing
Swerved that shit like Neo.
It’s still happening, in spite of the new guidelines…not that I am surprised.
#MECFS #pwME #MillionsMissing
So good to see @bmhughes.bsky.social here!
Brian’s work is absolutely invaluable for pwME, soundly refuting the BPS nonsense that has ruined so many lives.
100% follow!
#MECFS #pwME
Brian’s work is absolutely invaluable for pwME, soundly refuting the BPS nonsense that has ruined so many lives.
100% follow!
#MECFS #pwME
October 15, 2023 at 8:04 PM
So good to see @bmhughes.bsky.social here!
Brian’s work is absolutely invaluable for pwME, soundly refuting the BPS nonsense that has ruined so many lives.
100% follow!
#MECFS #pwME
Brian’s work is absolutely invaluable for pwME, soundly refuting the BPS nonsense that has ruined so many lives.
100% follow!
#MECFS #pwME
Great to see Dr Asad Khan on here: @doctorasadkhan.bsky.social !
A wonderfully intelligent and compassionate advocate for #LongCovid, #MECFS and associated illnesses.
Follow 100%!
A wonderfully intelligent and compassionate advocate for #LongCovid, #MECFS and associated illnesses.
Follow 100%!
October 9, 2023 at 10:45 PM
Great to see Dr Asad Khan on here: @doctorasadkhan.bsky.social !
A wonderfully intelligent and compassionate advocate for #LongCovid, #MECFS and associated illnesses.
Follow 100%!
A wonderfully intelligent and compassionate advocate for #LongCovid, #MECFS and associated illnesses.
Follow 100%!
I often wonder how much being diagnosed with ME in late 2011–a few months after the arguably-fraudulent PACE trial had dropped—had on my disease progression.
I’m inclined to think a lot…but will never know for sure.
I’m inclined to think a lot…but will never know for sure.
Another reminder that before the 1990s it was well-known by the medical profession that rest was essential for managing ME.
October 9, 2023 at 6:12 PM
I often wonder how much being diagnosed with ME in late 2011–a few months after the arguably-fraudulent PACE trial had dropped—had on my disease progression.
I’m inclined to think a lot…but will never know for sure.
I’m inclined to think a lot…but will never know for sure.
Reposted by Ben H
#DecodeME needs more UK participants with an ME/#CFS diagnosis, incl. those diagnosed following Covid infection, & reminds people who have been sent a spit kit to return them. Final date for submitting the questionnaire is 15th November at 5pm
www.decodeme.org.uk/portal/
#MEcfs #MyalgicE #PwME
www.decodeme.org.uk/portal/
#MEcfs #MyalgicE #PwME
October 9, 2023 at 2:04 PM
#DecodeME needs more UK participants with an ME/#CFS diagnosis, incl. those diagnosed following Covid infection, & reminds people who have been sent a spit kit to return them. Final date for submitting the questionnaire is 15th November at 5pm
www.decodeme.org.uk/portal/
#MEcfs #MyalgicE #PwME
www.decodeme.org.uk/portal/
#MEcfs #MyalgicE #PwME
Reposted by Ben H
We have a dedicated page for #MECFS scientists who are looking for ways to fund their biomedical research. We hope this will be a useful collection of resources to those who are studying ME and also #LongCOVID
europeanmecoalition.com/resources-fo...
europeanmecoalition.com/resources-fo...
October 5, 2023 at 2:55 PM
We have a dedicated page for #MECFS scientists who are looking for ways to fund their biomedical research. We hope this will be a useful collection of resources to those who are studying ME and also #LongCOVID
europeanmecoalition.com/resources-fo...
europeanmecoalition.com/resources-fo...
Reposted by Ben H
Reached my goal of $6K raised for #MECFS and #LongCOVID research at @openmedf.bsky.social after a week!!! But the need is so great due to institutional regret so you still have to hear about it until the end of the month. openmedicinefoundation.crowdchange.co/35021
Open Medicine Foundation | Fundraisers
Open Medicine Foundation (OMF) envisions improved health care for people with chronic complex diseases.
openmedicinefoundation.crowdchange.co
October 7, 2023 at 8:38 PM
Reached my goal of $6K raised for #MECFS and #LongCOVID research at @openmedf.bsky.social after a week!!! But the need is so great due to institutional regret so you still have to hear about it until the end of the month. openmedicinefoundation.crowdchange.co/35021
Thane @thaneblack.bsky.social is one of the wisest, most articulate and kindest #pwME you could ever hope to meet.
So glad to see him here! Follow 100%!
So glad to see him here! Follow 100%!
October 7, 2023 at 10:07 PM
Thane @thaneblack.bsky.social is one of the wisest, most articulate and kindest #pwME you could ever hope to meet.
So glad to see him here! Follow 100%!
So glad to see him here! Follow 100%!
First (home/carer) haircut in 3-4 years.
This was a couple of weeks ago but I have only just recovered…I think.
#MECFS #pwME #MillionsMissing
This was a couple of weeks ago but I have only just recovered…I think.
#MECFS #pwME #MillionsMissing
October 7, 2023 at 6:44 PM
First (home/carer) haircut in 3-4 years.
This was a couple of weeks ago but I have only just recovered…I think.
#MECFS #pwME #MillionsMissing
This was a couple of weeks ago but I have only just recovered…I think.
#MECFS #pwME #MillionsMissing
If you skip to 1.05 and replace the word ‘football’ with ‘CBT’, it’s uncanny how much this reminds me of the energy that the BPS brigade give off.
Without the self-awareness and satire, of course.
youtu.be/MusyO7J2inM?...
Without the self-awareness and satire, of course.
youtu.be/MusyO7J2inM?...
Watch the Football! ⚽ | That Mitchell and Webb Look - BBC
Subscribe and 🔔 to the BBC 👉 https://bit.ly/BBCYouTubeSubWatch the BBC first on iPlayer 👉 https://bbc.in/iPlayer-Home A sports pundit gives a vitriolic ra...
youtu.be
October 5, 2023 at 5:03 PM
If you skip to 1.05 and replace the word ‘football’ with ‘CBT’, it’s uncanny how much this reminds me of the energy that the BPS brigade give off.
Without the self-awareness and satire, of course.
youtu.be/MusyO7J2inM?...
Without the self-awareness and satire, of course.
youtu.be/MusyO7J2inM?...
Hello! We're so glad that you've joined us here. If you're new to us, we are Open Medicine Foundation (OMF). We're driving ME/CFS and Long COVID research forward with the end goal of finding effective treatments and a cure. Learn more about us at www.omf.ngo.
October 4, 2023 at 6:14 PM
Reposted by Ben H
From Malcolm Bailey of #MEAction Network UK:
"NICE have now shared with us that they submitted their own rebuttal paper direct to the JNNP* and are awaiting a response"
*Anomalies in the review process & interpretation of the evidence in the NICE guideline for (#CFS & ME)"
#MEcfs #PwME
"NICE have now shared with us that they submitted their own rebuttal paper direct to the JNNP* and are awaiting a response"
*Anomalies in the review process & interpretation of the evidence in the NICE guideline for (#CFS & ME)"
#MEcfs #PwME
October 3, 2023 at 11:43 AM
From Malcolm Bailey of #MEAction Network UK:
"NICE have now shared with us that they submitted their own rebuttal paper direct to the JNNP* and are awaiting a response"
*Anomalies in the review process & interpretation of the evidence in the NICE guideline for (#CFS & ME)"
#MEcfs #PwME
"NICE have now shared with us that they submitted their own rebuttal paper direct to the JNNP* and are awaiting a response"
*Anomalies in the review process & interpretation of the evidence in the NICE guideline for (#CFS & ME)"
#MEcfs #PwME
Reposted by Ben H
Happy to be here! 🇪🇺
In case you haven’t heard of us, check out our website: europeanmecoalition.com
We are trying to raise awareness of Myalgic Encephalomyelitis #MECFS at the European level, denouncing the lack of funding for biomedical scientific research on this devastating disease.
In case you haven’t heard of us, check out our website: europeanmecoalition.com
We are trying to raise awareness of Myalgic Encephalomyelitis #MECFS at the European level, denouncing the lack of funding for biomedical scientific research on this devastating disease.
October 3, 2023 at 3:30 PM
Happy to be here! 🇪🇺
In case you haven’t heard of us, check out our website: europeanmecoalition.com
We are trying to raise awareness of Myalgic Encephalomyelitis #MECFS at the European level, denouncing the lack of funding for biomedical scientific research on this devastating disease.
In case you haven’t heard of us, check out our website: europeanmecoalition.com
We are trying to raise awareness of Myalgic Encephalomyelitis #MECFS at the European level, denouncing the lack of funding for biomedical scientific research on this devastating disease.
Reposted by Ben H
2/
& advised to go for a walk when he no longer was able to control his muscles or eat. The newspaper writes during the last year they have been in contact with more than 200 carers & patients who tell the same story about failure from the Danish health system leading to deterioration for patients
& advised to go for a walk when he no longer was able to control his muscles or eat. The newspaper writes during the last year they have been in contact with more than 200 carers & patients who tell the same story about failure from the Danish health system leading to deterioration for patients
October 1, 2023 at 7:53 PM
2/
& advised to go for a walk when he no longer was able to control his muscles or eat. The newspaper writes during the last year they have been in contact with more than 200 carers & patients who tell the same story about failure from the Danish health system leading to deterioration for patients
& advised to go for a walk when he no longer was able to control his muscles or eat. The newspaper writes during the last year they have been in contact with more than 200 carers & patients who tell the same story about failure from the Danish health system leading to deterioration for patients
Reposted by Ben H
🧵
Danish newspaper BT writes about the terrible story to #severeME sufferer Morten Brandt who recently passed. Due to this disease being viewed as a "functional disorder" in Denmark, Morten was refused help
Google English translation
tinyurl.com/yc8pbb4e
#MEcfs #CFS #PwME
1/
Danish newspaper BT writes about the terrible story to #severeME sufferer Morten Brandt who recently passed. Due to this disease being viewed as a "functional disorder" in Denmark, Morten was refused help
Google English translation
tinyurl.com/yc8pbb4e
#MEcfs #CFS #PwME
1/
October 1, 2023 at 7:51 PM
🧵
Danish newspaper BT writes about the terrible story to #severeME sufferer Morten Brandt who recently passed. Due to this disease being viewed as a "functional disorder" in Denmark, Morten was refused help
Google English translation
tinyurl.com/yc8pbb4e
#MEcfs #CFS #PwME
1/
Danish newspaper BT writes about the terrible story to #severeME sufferer Morten Brandt who recently passed. Due to this disease being viewed as a "functional disorder" in Denmark, Morten was refused help
Google English translation
tinyurl.com/yc8pbb4e
#MEcfs #CFS #PwME
1/
Reposted by Ben H
Hello bluesky people. This is my first post here.
Please sign and share this important petition:
chng.it/zTZ7vX9Czd
Please sign and share this important petition:
chng.it/zTZ7vX9Czd
October 2, 2023 at 6:54 PM
Hello bluesky people. This is my first post here.
Please sign and share this important petition:
chng.it/zTZ7vX9Czd
Please sign and share this important petition:
chng.it/zTZ7vX9Czd
Reposted by Ben H
Morning report: 1100 codes now in the hands of the chronic illness community! Yippee! I think I'm soon going to need to get even more organized and learn to create a script, so I don't make spreadsheet/mail merge mistakes. Donate/request here: forms.gle/8JX8Bb2wD1DC...
October 2, 2023 at 2:14 PM
Morning report: 1100 codes now in the hands of the chronic illness community! Yippee! I think I'm soon going to need to get even more organized and learn to create a script, so I don't make spreadsheet/mail merge mistakes. Donate/request here: forms.gle/8JX8Bb2wD1DC...
Reposted by Ben H
700 donated BlueSky codes have made it into the hands of members of the chronic illness community, with another 100 ready to go tomorrow morning, once my mail merge program has had a rest so I'm not exceeding its limits. Thank you so much! Let's keep it up. forms.gle/k1paHEsGnNJV...
October 2, 2023 at 2:17 AM
700 donated BlueSky codes have made it into the hands of members of the chronic illness community, with another 100 ready to go tomorrow morning, once my mail merge program has had a rest so I'm not exceeding its limits. Thank you so much! Let's keep it up. forms.gle/k1paHEsGnNJV...
It’s beautiful to see the community—with so many familiar faces that are cared for so much—be brought over to bloom here. The oppression has been heavy as of late.
Huge appreciation for @julierehmeyer.bsky.social for her initiative as well as others!
#MECFS #LongCovid #pwME #ChronicIllness
Huge appreciation for @julierehmeyer.bsky.social for her initiative as well as others!
#MECFS #LongCovid #pwME #ChronicIllness
October 1, 2023 at 9:55 PM
It’s beautiful to see the community—with so many familiar faces that are cared for so much—be brought over to bloom here. The oppression has been heavy as of late.
Huge appreciation for @julierehmeyer.bsky.social for her initiative as well as others!
#MECFS #LongCovid #pwME #ChronicIllness
Huge appreciation for @julierehmeyer.bsky.social for her initiative as well as others!
#MECFS #LongCovid #pwME #ChronicIllness
Reposted by Ben H
via Richard Vallée:
ChatGPT response to:
"Can you offer a critique and evaluation of this [Oslo Chronic Fatigue Consortium] research article, its scientific value and accuracy, as well as the validity of the claims made by the authors?"
www.s4me.info/threads/chro...
#MEcfs #CFS #PwME
ChatGPT response to:
"Can you offer a critique and evaluation of this [Oslo Chronic Fatigue Consortium] research article, its scientific value and accuracy, as well as the validity of the claims made by the authors?"
www.s4me.info/threads/chro...
#MEcfs #CFS #PwME
October 1, 2023 at 5:44 PM
via Richard Vallée:
ChatGPT response to:
"Can you offer a critique and evaluation of this [Oslo Chronic Fatigue Consortium] research article, its scientific value and accuracy, as well as the validity of the claims made by the authors?"
www.s4me.info/threads/chro...
#MEcfs #CFS #PwME
ChatGPT response to:
"Can you offer a critique and evaluation of this [Oslo Chronic Fatigue Consortium] research article, its scientific value and accuracy, as well as the validity of the claims made by the authors?"
www.s4me.info/threads/chro...
#MEcfs #CFS #PwME
Reposted by Ben H
Well it’s spooky szn! And nothing is spookier than having a LDN incurable and disabling complex chronic illness like #MECFS. That’s why all month long I’m fundraising for Open Medicine Foundation. Donate/share/etc so we can raise as much money as possible! openmedicinefoundation.crowdchange.co/35021
Open Medicine Foundation | Fundraisers
Open Medicine Foundation (OMF) envisions improved health care for people with chronic complex diseases.
openmedicinefoundation.crowdchange.co
October 1, 2023 at 3:10 PM
Well it’s spooky szn! And nothing is spookier than having a LDN incurable and disabling complex chronic illness like #MECFS. That’s why all month long I’m fundraising for Open Medicine Foundation. Donate/share/etc so we can raise as much money as possible! openmedicinefoundation.crowdchange.co/35021
Reposted by Ben H
Hey, all. Julie Rehmeyer has made it easy to donate Blue Sky invite codes to folks in the disability community for whom Twitter was a crucial support. If you have extras you can drop them here: docs.google.com/forms/d/e/1F...
BlueSky Invites for the Chronic Illness Community
Please fill out this form if you're the chronic illness community and you'd like to either (1) donate invite codes or (2) request an invite.
docs.google.com
September 30, 2023 at 11:16 PM
Hey, all. Julie Rehmeyer has made it easy to donate Blue Sky invite codes to folks in the disability community for whom Twitter was a crucial support. If you have extras you can drop them here: docs.google.com/forms/d/e/1F...
Reposted by Ben H
Fabulous start to the project of migrating the chronic illness community over here! In the first 12 hours of this form being up, I got 138 donated Blue Sky codes to chronically ill Twitter refugees, with 37 more people in the queue. Please keep donating! forms.gle/tHNTyxG31uPQ...
September 30, 2023 at 4:10 PM
Fabulous start to the project of migrating the chronic illness community over here! In the first 12 hours of this form being up, I got 138 donated Blue Sky codes to chronically ill Twitter refugees, with 37 more people in the queue. Please keep donating! forms.gle/tHNTyxG31uPQ...
Reposted by Ben H
I created this form to help distribute codes so the chronic illness community can congregate on Blue Sky. Please fill it out if you have codes to donate, and spread the link far and wide. forms.gle/LGVPYz8i3U8e... Let's protect our community from platform collapse!
September 30, 2023 at 1:07 AM
I created this form to help distribute codes so the chronic illness community can congregate on Blue Sky. Please fill it out if you have codes to donate, and spread the link far and wide. forms.gle/LGVPYz8i3U8e... Let's protect our community from platform collapse!
A wave and a shoutout to the MECFS, LongCovid and chronic illness community. Nice to see lots of familiar faces on here.
Thanks to the absolute gem that is @julierehmeyer.bsky.social too, as always.
Look forward to discussion on here. :)
#MECFS #LongCovid #pwME #MillionsMissing #ChronicIllness
Thanks to the absolute gem that is @julierehmeyer.bsky.social too, as always.
Look forward to discussion on here. :)
#MECFS #LongCovid #pwME #MillionsMissing #ChronicIllness
September 30, 2023 at 12:14 AM
A wave and a shoutout to the MECFS, LongCovid and chronic illness community. Nice to see lots of familiar faces on here.
Thanks to the absolute gem that is @julierehmeyer.bsky.social too, as always.
Look forward to discussion on here. :)
#MECFS #LongCovid #pwME #MillionsMissing #ChronicIllness
Thanks to the absolute gem that is @julierehmeyer.bsky.social too, as always.
Look forward to discussion on here. :)
#MECFS #LongCovid #pwME #MillionsMissing #ChronicIllness