Busy May ahead of us 💜
Monday the 12th is National ME Day, and I'll be sharing my story on stream as well as others to spread awareness
Any money from that stream will be donated to MEASSOCIATION charity
#MECFS
#MECFSAwarenessMonth
#LongCovid #pwME #pwLC
www.twitch.tv/katyfear
Monday the 12th is National ME Day, and I'll be sharing my story on stream as well as others to spread awareness
Any money from that stream will be donated to MEASSOCIATION charity
#MECFS
#MECFSAwarenessMonth
#LongCovid #pwME #pwLC
www.twitch.tv/katyfear
May 9, 2025 at 9:20 AM
Busy May ahead of us 💜
Monday the 12th is National ME Day, and I'll be sharing my story on stream as well as others to spread awareness
Any money from that stream will be donated to MEASSOCIATION charity
#MECFS
#MECFSAwarenessMonth
#LongCovid #pwME #pwLC
www.twitch.tv/katyfear
Monday the 12th is National ME Day, and I'll be sharing my story on stream as well as others to spread awareness
Any money from that stream will be donated to MEASSOCIATION charity
#MECFS
#MECFSAwarenessMonth
#LongCovid #pwME #pwLC
www.twitch.tv/katyfear
There is so much in me begging to get out! I want to work, sweat, toil and exhaust myself working towards dreams and goals and see them become real in front of me!
Oh, but I forgot, I don't want any of that, you're right Simon Wessely I love this, please repress me more.
#MECFSAwarenessMonth
Oh, but I forgot, I don't want any of that, you're right Simon Wessely I love this, please repress me more.
#MECFSAwarenessMonth
May 22, 2025 at 7:54 PM
There is so much in me begging to get out! I want to work, sweat, toil and exhaust myself working towards dreams and goals and see them become real in front of me!
Oh, but I forgot, I don't want any of that, you're right Simon Wessely I love this, please repress me more.
#MECFSAwarenessMonth
Oh, but I forgot, I don't want any of that, you're right Simon Wessely I love this, please repress me more.
#MECFSAwarenessMonth
Later this year will mark the 15th year since i got the pneumonia that triggered my ME/CFS. Still no FDA approved treatments, no cure and very little research. #MECFSawarenessmonth
May 14, 2026 at 9:18 PM
Later this year will mark the 15th year since i got the pneumonia that triggered my ME/CFS. Still no FDA approved treatments, no cure and very little research. #MECFSawarenessmonth
#MECFSAwarenessMonth – Day 22: Conclusion
Thirty years on, major health agencies have rejected the psychological approach to #MECFS. Patients were right — but the impact has been devastating. Harm, stigma, denial of care, stalled research and patients have no treatments.
Thirty years on, major health agencies have rejected the psychological approach to #MECFS. Patients were right — but the impact has been devastating. Harm, stigma, denial of care, stalled research and patients have no treatments.
May 22, 2025 at 5:17 AM
#MECFSAwarenessMonth – Day 22: Conclusion
Thirty years on, major health agencies have rejected the psychological approach to #MECFS. Patients were right — but the impact has been devastating. Harm, stigma, denial of care, stalled research and patients have no treatments.
Thirty years on, major health agencies have rejected the psychological approach to #MECFS. Patients were right — but the impact has been devastating. Harm, stigma, denial of care, stalled research and patients have no treatments.
#MECFSAwarenessMonth – Day 21
2021: After a comprehensive review, NICE finds all evidence for Graded Exercise Therapy and CBT to be of low or very low quality. GET is found to be harmful and is no longer recommended. CBT is downgraded to supportive use only.
2021: After a comprehensive review, NICE finds all evidence for Graded Exercise Therapy and CBT to be of low or very low quality. GET is found to be harmful and is no longer recommended. CBT is downgraded to supportive use only.
May 21, 2025 at 5:19 AM
#MECFSAwarenessMonth – Day 21
2021: After a comprehensive review, NICE finds all evidence for Graded Exercise Therapy and CBT to be of low or very low quality. GET is found to be harmful and is no longer recommended. CBT is downgraded to supportive use only.
2021: After a comprehensive review, NICE finds all evidence for Graded Exercise Therapy and CBT to be of low or very low quality. GET is found to be harmful and is no longer recommended. CBT is downgraded to supportive use only.
#MECFSAwarenessMonth – Day 20
2018: Emma Shorter tells the Scottish Parliament how Graded Exercise Therapy left her needing a wheelchair. Prof. Jonathan Edwards submits evidence saying patients were vilified but they were right — the science was poor quality.
2018: Emma Shorter tells the Scottish Parliament how Graded Exercise Therapy left her needing a wheelchair. Prof. Jonathan Edwards submits evidence saying patients were vilified but they were right — the science was poor quality.
May 20, 2025 at 7:07 AM
#MECFSAwarenessMonth – Day 20
2018: Emma Shorter tells the Scottish Parliament how Graded Exercise Therapy left her needing a wheelchair. Prof. Jonathan Edwards submits evidence saying patients were vilified but they were right — the science was poor quality.
2018: Emma Shorter tells the Scottish Parliament how Graded Exercise Therapy left her needing a wheelchair. Prof. Jonathan Edwards submits evidence saying patients were vilified but they were right — the science was poor quality.
#MECFSAwarenessMonth – Day 19
2018: A re-analysis of the PACE trial, using the authors’ original plan, finds the results were inflated and that GET and CBT are not effective. If the authors had kept to their original plan, the PACE trial could not have been reported as a success.
2018: A re-analysis of the PACE trial, using the authors’ original plan, finds the results were inflated and that GET and CBT are not effective. If the authors had kept to their original plan, the PACE trial could not have been reported as a success.
May 19, 2025 at 6:03 AM
#MECFSAwarenessMonth – Day 19
2018: A re-analysis of the PACE trial, using the authors’ original plan, finds the results were inflated and that GET and CBT are not effective. If the authors had kept to their original plan, the PACE trial could not have been reported as a success.
2018: A re-analysis of the PACE trial, using the authors’ original plan, finds the results were inflated and that GET and CBT are not effective. If the authors had kept to their original plan, the PACE trial could not have been reported as a success.
#MECFSAwarenessMonth – Day 18
2018: MP Carol Monaghan leads the first of 3 UK Parliament debates on ME, including one about the PACE trial. She highlights patient harm and flawed research, calling it “one of the biggest medical scandals of the 21st century.”
2018: MP Carol Monaghan leads the first of 3 UK Parliament debates on ME, including one about the PACE trial. She highlights patient harm and flawed research, calling it “one of the biggest medical scandals of the 21st century.”
May 18, 2025 at 5:59 AM
#MECFSAwarenessMonth – Day 18
2018: MP Carol Monaghan leads the first of 3 UK Parliament debates on ME, including one about the PACE trial. She highlights patient harm and flawed research, calling it “one of the biggest medical scandals of the 21st century.”
2018: MP Carol Monaghan leads the first of 3 UK Parliament debates on ME, including one about the PACE trial. She highlights patient harm and flawed research, calling it “one of the biggest medical scandals of the 21st century.”
#MECFSAwarenessMonth – Day 17
2017: The CDC drops its recommendation for Graded Exercise Therapy and CBT — a major step away from the psychological model. An analysis of multiple treatment surveys finds over 50% of #MECFS patients report Graded Exercise Therapy made them worse.
2017: The CDC drops its recommendation for Graded Exercise Therapy and CBT — a major step away from the psychological model. An analysis of multiple treatment surveys finds over 50% of #MECFS patients report Graded Exercise Therapy made them worse.
May 17, 2025 at 5:08 AM
#MECFSAwarenessMonth – Day 17
2017: The CDC drops its recommendation for Graded Exercise Therapy and CBT — a major step away from the psychological model. An analysis of multiple treatment surveys finds over 50% of #MECFS patients report Graded Exercise Therapy made them worse.
2017: The CDC drops its recommendation for Graded Exercise Therapy and CBT — a major step away from the psychological model. An analysis of multiple treatment surveys finds over 50% of #MECFS patients report Graded Exercise Therapy made them worse.
#MECFSAwarenessMonth – Day 16
May 2017: Merryn Crofts dies of Severe ME. Merryn’s mum, Clare Norton, is very critical of the PACE trial and the NICE guideline, believing advice to slow down and rest earlier might have prevented her deterioration into Severe ME.
May 2017: Merryn Crofts dies of Severe ME. Merryn’s mum, Clare Norton, is very critical of the PACE trial and the NICE guideline, believing advice to slow down and rest earlier might have prevented her deterioration into Severe ME.
May 16, 2025 at 5:36 AM
#MECFSAwarenessMonth – Day 16
May 2017: Merryn Crofts dies of Severe ME. Merryn’s mum, Clare Norton, is very critical of the PACE trial and the NICE guideline, believing advice to slow down and rest earlier might have prevented her deterioration into Severe ME.
May 2017: Merryn Crofts dies of Severe ME. Merryn’s mum, Clare Norton, is very critical of the PACE trial and the NICE guideline, believing advice to slow down and rest earlier might have prevented her deterioration into Severe ME.
#MECFSAwarenessMonth – Day 14:
2015: Long-term PACE trial results show no long term benefit from CBT or GET compared to standard medical care. Yet authors still claimed effectiveness. The Science Media Centre backed the findings, and media reported success despite criticism.
2015: Long-term PACE trial results show no long term benefit from CBT or GET compared to standard medical care. Yet authors still claimed effectiveness. The Science Media Centre backed the findings, and media reported success despite criticism.
May 14, 2025 at 6:36 AM
#MECFSAwarenessMonth – Day 14:
2015: Long-term PACE trial results show no long term benefit from CBT or GET compared to standard medical care. Yet authors still claimed effectiveness. The Science Media Centre backed the findings, and media reported success despite criticism.
2015: Long-term PACE trial results show no long term benefit from CBT or GET compared to standard medical care. Yet authors still claimed effectiveness. The Science Media Centre backed the findings, and media reported success despite criticism.
#MECFSAwarenessMonth – Day 13
2015: A landmark report in the US reviews 9,000+ studies and concludes ME/CFS is a “serious, chronic, complex” disease — not psychiatric. It identifies post-exertional malaise as a key diagnostic feature and helps shift understanding.
2015: A landmark report in the US reviews 9,000+ studies and concludes ME/CFS is a “serious, chronic, complex” disease — not psychiatric. It identifies post-exertional malaise as a key diagnostic feature and helps shift understanding.
May 13, 2025 at 7:09 AM
#MECFSAwarenessMonth – Day 13
2015: A landmark report in the US reviews 9,000+ studies and concludes ME/CFS is a “serious, chronic, complex” disease — not psychiatric. It identifies post-exertional malaise as a key diagnostic feature and helps shift understanding.
2015: A landmark report in the US reviews 9,000+ studies and concludes ME/CFS is a “serious, chronic, complex” disease — not psychiatric. It identifies post-exertional malaise as a key diagnostic feature and helps shift understanding.
#MECFSAwarenessMonth – Day 12
2011: Ian Gibson MP highlights a high-level block on biomedical #MECFS research. A study also reveals nurses’ frustration delivering psychological treatments — one supervisor reported a feeling of, “the bastards don’t want to get better.”
2011: Ian Gibson MP highlights a high-level block on biomedical #MECFS research. A study also reveals nurses’ frustration delivering psychological treatments — one supervisor reported a feeling of, “the bastards don’t want to get better.”
May 12, 2025 at 6:12 AM
#MECFSAwarenessMonth – Day 12
2011: Ian Gibson MP highlights a high-level block on biomedical #MECFS research. A study also reveals nurses’ frustration delivering psychological treatments — one supervisor reported a feeling of, “the bastards don’t want to get better.”
2011: Ian Gibson MP highlights a high-level block on biomedical #MECFS research. A study also reveals nurses’ frustration delivering psychological treatments — one supervisor reported a feeling of, “the bastards don’t want to get better.”
#MECFSAwarenessMonth – Day 11
The Science Media Centre, which has strong ties to Wessely, launches a media campaign portraying #MECFS patients as dangerous activists who threaten researchers - it discredits patients and diverts attention from valid concerns about research.
The Science Media Centre, which has strong ties to Wessely, launches a media campaign portraying #MECFS patients as dangerous activists who threaten researchers - it discredits patients and diverts attention from valid concerns about research.
May 11, 2025 at 6:44 AM
#MECFSAwarenessMonth – Day 11
The Science Media Centre, which has strong ties to Wessely, launches a media campaign portraying #MECFS patients as dangerous activists who threaten researchers - it discredits patients and diverts attention from valid concerns about research.
The Science Media Centre, which has strong ties to Wessely, launches a media campaign portraying #MECFS patients as dangerous activists who threaten researchers - it discredits patients and diverts attention from valid concerns about research.
#MECFSAwarenessMonth – Day 10
2011: The £5m PACE trial claims CBT and Graded Exercise Therapy are effective treatments for ME/CFS. It’s widely condemned as deeply flawed and later cited as a case study in bad science.
2011: The £5m PACE trial claims CBT and Graded Exercise Therapy are effective treatments for ME/CFS. It’s widely condemned as deeply flawed and later cited as a case study in bad science.
May 10, 2025 at 5:25 AM
#MECFSAwarenessMonth – Day 10
2011: The £5m PACE trial claims CBT and Graded Exercise Therapy are effective treatments for ME/CFS. It’s widely condemned as deeply flawed and later cited as a case study in bad science.
2011: The £5m PACE trial claims CBT and Graded Exercise Therapy are effective treatments for ME/CFS. It’s widely condemned as deeply flawed and later cited as a case study in bad science.
#MECFSAwarenessMonth – Day 9
2007: NICE publishes a guideline recommending Graded Exercise Therapy and CBT for #MECFS. It’s condemned by doctors, charities, researchers, and patients due to weak evidence, bias on the committee, and concerns about harm.
2007: NICE publishes a guideline recommending Graded Exercise Therapy and CBT for #MECFS. It’s condemned by doctors, charities, researchers, and patients due to weak evidence, bias on the committee, and concerns about harm.
May 9, 2025 at 7:00 AM
#MECFSAwarenessMonth – Day 9
2007: NICE publishes a guideline recommending Graded Exercise Therapy and CBT for #MECFS. It’s condemned by doctors, charities, researchers, and patients due to weak evidence, bias on the committee, and concerns about harm.
2007: NICE publishes a guideline recommending Graded Exercise Therapy and CBT for #MECFS. It’s condemned by doctors, charities, researchers, and patients due to weak evidence, bias on the committee, and concerns about harm.
#MECFSAwarenessMonth – Day 8
2005: Sophia Mirza dies of severe ME. Prior to her death, she was wrongfully sectioned for refusing to attend a clinic offering Graded Exercise Therapy. Mistreatment during her stay led to a dramatic deterioration, and she never recovered.
2005: Sophia Mirza dies of severe ME. Prior to her death, she was wrongfully sectioned for refusing to attend a clinic offering Graded Exercise Therapy. Mistreatment during her stay led to a dramatic deterioration, and she never recovered.
May 8, 2025 at 5:01 AM
#MECFSAwarenessMonth – Day 8
2005: Sophia Mirza dies of severe ME. Prior to her death, she was wrongfully sectioned for refusing to attend a clinic offering Graded Exercise Therapy. Mistreatment during her stay led to a dramatic deterioration, and she never recovered.
2005: Sophia Mirza dies of severe ME. Prior to her death, she was wrongfully sectioned for refusing to attend a clinic offering Graded Exercise Therapy. Mistreatment during her stay led to a dramatic deterioration, and she never recovered.
#MECFSAwarenessMonth – Day 7
1999: Wessely sets up the first NHS clinic for CFS. An influential GP training video calls patients “very frustrating” due to arguments, downplays severity, and promotes exercise even when they feel “rotten” — which is potentially very harmful.
1999: Wessely sets up the first NHS clinic for CFS. An influential GP training video calls patients “very frustrating” due to arguments, downplays severity, and promotes exercise even when they feel “rotten” — which is potentially very harmful.
May 7, 2025 at 8:15 AM
#MECFSAwarenessMonth – Day 7
1999: Wessely sets up the first NHS clinic for CFS. An influential GP training video calls patients “very frustrating” due to arguments, downplays severity, and promotes exercise even when they feel “rotten” — which is potentially very harmful.
1999: Wessely sets up the first NHS clinic for CFS. An influential GP training video calls patients “very frustrating” due to arguments, downplays severity, and promotes exercise even when they feel “rotten” — which is potentially very harmful.
#MECFSAwarenessMonth – Day 6
1993-96: Wessely lobbied the UK government to reject ME as a neurological disorder and led an influential report that downplayed biomedical causes, pushed psychological treatments, and resulted in the virtual disappearance of ME for the next decade.
1993-96: Wessely lobbied the UK government to reject ME as a neurological disorder and led an influential report that downplayed biomedical causes, pushed psychological treatments, and resulted in the virtual disappearance of ME for the next decade.
May 6, 2025 at 6:09 AM
#MECFSAwarenessMonth – Day 6
1993-96: Wessely lobbied the UK government to reject ME as a neurological disorder and led an influential report that downplayed biomedical causes, pushed psychological treatments, and resulted in the virtual disappearance of ME for the next decade.
1993-96: Wessely lobbied the UK government to reject ME as a neurological disorder and led an influential report that downplayed biomedical causes, pushed psychological treatments, and resulted in the virtual disappearance of ME for the next decade.
#MECFSAwarenessMonth – Day 5
1991, the Oxford criteria for CFS were published. Vague and overly broad, they effectively identified people with unexplained fatigue. Despite being seriously flawed, they became popular in UK research and distorted understanding of ME for decades.
1991, the Oxford criteria for CFS were published. Vague and overly broad, they effectively identified people with unexplained fatigue. Despite being seriously flawed, they became popular in UK research and distorted understanding of ME for decades.
May 5, 2025 at 6:20 AM
#MECFSAwarenessMonth – Day 5
1991, the Oxford criteria for CFS were published. Vague and overly broad, they effectively identified people with unexplained fatigue. Despite being seriously flawed, they became popular in UK research and distorted understanding of ME for decades.
1991, the Oxford criteria for CFS were published. Vague and overly broad, they effectively identified people with unexplained fatigue. Despite being seriously flawed, they became popular in UK research and distorted understanding of ME for decades.
To mark #MECFS Awareness Month, I’ll be sharing short clips from my #MECFS scandal explainer video, starting with the early history covering the Royal Free outbreak, the WHO and the damaging McEvedy/Beard paper.
#MECFSAwareness #MECFSAwarenessMonth
#MECFSAwareness #MECFSAwarenessMonth
May 1, 2025 at 1:02 PM
To mark #MECFS Awareness Month, I’ll be sharing short clips from my #MECFS scandal explainer video, starting with the early history covering the Royal Free outbreak, the WHO and the damaging McEvedy/Beard paper.
#MECFSAwareness #MECFSAwarenessMonth
#MECFSAwareness #MECFSAwarenessMonth
I made a video to raise awareness about #MECFS and it has over 8000 views.
Mx on Instagram: "This is my experience of #mecfs
#goblueformecfs for #mecfsawarenessmonth . Our official day is May 12th. Millions of us are missing due to this horrific illness.
#mecfsawarenessda...
162 likes, 58 comments - lordofmxrule on May 9, 2024: "This is my experience of #mecfs
#goblueformecfs for #mecfsawarenessmonth . Our official day is May 12th. Millions of us are missing due ...".
www.instagram.com
May 15, 2024 at 12:51 AM
I made a video to raise awareness about #MECFS and it has over 8000 views.
May is #MECFSAwarenessMonth
Together with @openmedf.bsky.social, @meactnet.bsky.social, and @solveme.bsky.social, we’re working to raise awareness and expand understanding of ME/CFS.
Add #UnitedForME to your posts and be part of the collective effort this month.
#MECFSAwareness #MECFSAwarenessDay
Together with @openmedf.bsky.social, @meactnet.bsky.social, and @solveme.bsky.social, we’re working to raise awareness and expand understanding of ME/CFS.
Add #UnitedForME to your posts and be part of the collective effort this month.
#MECFSAwareness #MECFSAwarenessDay
May 6, 2026 at 6:12 PM
May is #MECFSAwarenessMonth
Together with @openmedf.bsky.social, @meactnet.bsky.social, and @solveme.bsky.social, we’re working to raise awareness and expand understanding of ME/CFS.
Add #UnitedForME to your posts and be part of the collective effort this month.
#MECFSAwareness #MECFSAwarenessDay
Together with @openmedf.bsky.social, @meactnet.bsky.social, and @solveme.bsky.social, we’re working to raise awareness and expand understanding of ME/CFS.
Add #UnitedForME to your posts and be part of the collective effort this month.
#MECFSAwareness #MECFSAwarenessDay
ME/CFS is...
... a disabled body&brain.
The person is still fabulous though!
#mecfsis
#MECFSAwarenessMonth
@openmedf.bsky.social
... a disabled body&brain.
The person is still fabulous though!
#mecfsis
#MECFSAwarenessMonth
@openmedf.bsky.social
April 19, 2025 at 6:46 AM
ME/CFS is...
... a disabled body&brain.
The person is still fabulous though!
#mecfsis
#MECFSAwarenessMonth
@openmedf.bsky.social
... a disabled body&brain.
The person is still fabulous though!
#mecfsis
#MECFSAwarenessMonth
@openmedf.bsky.social