#pwmes — Public Fediverse posts

7/

“Altering plans may allow your friend to be included. However, ME/CFS and long COVID are unpredictable, and sometimes even when you change plans to try to include them, on the day, they may be feeling worse than they anticipated and need to cancel at late notice.”

#MEcfs #PwLC #LongCovid #PwMEs
@mecfs @longcovid

‪2/‬

‪I believe I was the first person to highlight this issue in a formal publication 15 years ago and a number of my papers and letters since then have been about this and related issues‬
‪Most of my publications can be read for free here: https://www.researchgate.net/profile/Tom-Kindlon‬

‪#CFS #PwMEs‬ #mecfs
@mecfs

7/

“However, with the onslaught of Long COVID, more attention has been given to the devastating impact this disease [ME/CFS] has on quality of life. These patients need more qualified care providers who have the most up-to-date research, care guidelines, and the inquisitiveness to solve difficult medically complex cases."

@longcovid @mecfs #mecfs #cfs #pwme #PwMEs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Interview with Anil van der Zee for severe M.E. Awareness Day 2023

An insightful interview with severe ME sufferer, professional dancer and forum member Anil van der Zee from his bed. He talks about his day-to-day life and raises the needs of severe ME sufferers. Duration: 32 minutes. English subtitles.

https://youtu.be/cInSsoxM0Zg

#severeme @mecfs #mecfs #cfs #pwme #pwmes #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Germany
A small "mourning walk" took place in Berlin on 8 August to mark Severe ME Day. The participants were dressed in black, with ear protection, sunglasses & held signs. After the walk of 300 metres, there was a lying down demonstration. There were several press reports, even the public news in an evening television programme

https://www.s4me.info/threads/news-from-germany.11006/page-13#post-488825

@mecfs @mecfs_de #mecfs #cfs #pwme #pwmes #cfsme #ChronicFatigueSyndrome

The Times (UK):
“NHS told to stop blaming ME patients for being ill and improve care”

https://shorturl.at/fgGLQ

Sean O’Neill: "My daughter Maeve succumbed to ME in her teens and died, aged 27, in 2021 after the illness became severe and totally debilitating. She struggled to get doctors and social workers to understand. And for years I also found it hard to accept and understand her illness."

@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #pwme #pwmes #cfs #cfsme

UK #DecodeME

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 25,000 DNA samples, including 5,000 diagnosed with ME/CFS following Covid-19 infection.

Spread the word:
https://www.decodeme.org.uk/ways-to-share/

@mecfs #mecfs #pwme #PwMEs #cfs #cfsme #ChronicFatigueSyndrome

Open Medicine Foundation Australia:

"We take immense pride in announcing the gracious gift of $500,000 to Open Medicine Foundation Australia Limited (OMFAL) to fund the initial phase of Dr. Chris Armstrong’s ground-breaking personalized treatment program." The gift is from the McCusker Charitable Foundation.

https://www.omf.ngo/McCusker-gift/

More info:
https://www.omf.ngo/melbourne-mecfs-research/

@mecfs #mecfs #pwme #PwMEs #cfs #MyalgicEncephalomyelitis #myalgice

Canada ICanCME Research Network Funding Announcement

"... a national research network funded by the Canadian Institutes of Health Research (CIHR). .. The ME Stars of Tomorrow Scholarship Program supports the work of promising graduate students who are conducting Myalgic Encephalomyelitis research as part of their masters or doctoral research project."

https://mailchi.mp/de70b9160260/icancme-research-network-funding-announcement_sot-2023

@mecfs #mecfs #cfs #pwme #pwmes #myalgice

Nature:
Connecting the dots from viral infection to disease

An editorial on the importance of research into viruses as causative agents of disease. "... multi-centre collaborations are needed to enable well-documented, large, longitudinal cohort studies…in order to unravel the complexities of virus-induced diseases, such as #LongCovid and ME/CFS."

https://rb.gy/khxlb

@mecfs #cfs #mecfs #pwme #pwmes #cfsme #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

#MEAction will now host Body Politic’s advocacy work as a project. "As more people with Long COVID begin to be diagnosed with ME, and as Long COVID research opportunities still continue to thrive, this joining of forces is an opportunity that we believe will be very beneficial to us all."

https://t.ly/l5rC2

@mecfs @longcovid #longcovid #mecfs #MyalgicEncephalomyelitis #pwme #pwlc #PostCovid #PostCovid19 #cfs #cfsme #PwMEs

“Exhausting the exhausted – how employers & insurers cruelly add to the burden of #LongCovid” (May 2023) by Sam Pearce

Focuses on a man with #PostCovid & #MyalgicEncephalomyelitis.

Insurers hope people will give up

Audio version available

https://www.dailymaverick.co.za/article/2023-05-16-exhausting-the-exhausted-how-employers-and-insurers-cruelly-add-to-the-burden-of-long-covid/

#ChronicFatigueSyndrome #cfs #pwmes #cfsme
#PwME @mecfs @longcovid

3/

“The review comes with an unusually long list of competing interests; many of its authors have built their careers on the notion that treatment for ME/CFS should be rehabilitative, consisting of physiotherapy, exercise and counseling. These authors receive payments either for providing exercise and counseling ‘treatments’, or for advising government departments or insurance companies that such treatments should be provided”

@mecfs #mecfs #pwme #PwMEs #cfs #cfsme

Thread 🧵

“Prestigious BMJ promotes ME/CFS misinformation” (15th Jul 2023)

“The prestigious British Medical Journal (BMJ) has published an article which profoundly misrepresents the state of scientific knowledge on ME/CFS”

https://mecfs-med-ed.org/2023/07/15/prestigious-bmj-promotes-me-cfs-misinformation/

@mecfs #MyalgicEncephalomyelitis #mecfs #cfs #pwme #PwMEs #ChronicFatigueSyndrome #cfsme

1/

4/

Translation of a summary for laypeople of the paper:
New research on ME patients' encounters with the services
https://t.ly/G_h-

Here is a translated summary from the team themselves

https://www.s4me.info/threads/do-diagnostic-criteria-for-me-matter-to-patient-experience-with-services-and-interventions-2023-kielland-et-all.33095/#post-472665

Discussion

https://t.ly/-rM7

#MEcfs #CFS #MyalgicE #PwME
@mecfs #MyalgicEncephalomyelitis #pwmes

3/

This is from this study that was published in April

"Do diagnostic criteria for ME matter to patient experience with services and interventions? Key results from an online RDS survey targeting fatigue patients in Norway"

Free:
https://journals.sagepub.com/doi/10.1177/13591053231169191

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #MyalgicE #PwMEs @mecfs

🧵
Translation of #MEcfs survey results:

Very negative/Negative/Neutral/Positive/Very positive

Therapies (from the top):

Gammanorm*/Coping course/Psychologist/Low Dose Naltrexone/Physiotherapist/Psychiatrist/Cognitive Therapy/Rehabilitation/Lightning Process/Work training

*Gammanorm = immunoglobulin https://www.medicines.org.uk/emc/product/5658/smpc#gref

@mecfs #mecfs #MyalgicEncephalomyelitis #cfs #pwme #pwmes #ChrooicFatigueSyndrome

1/

From the Open Medicine Foundation:

New Details on OMF Supported ME/CFS Research Projects in Australia: https://www.omf.ngo/melbourne-mecfs-research/

1️⃣Project 1: Personalized treatment trials

2️⃣ Project 2: Cell-based assay platform to assess the effect of drugs on improving function

#MECFS #Longcovid #medicalresearch
===
We have given substantial donations from our research fund to support the OMF over the years

@mecfs #pwme #pwmes #cfs

12/

“The impact on quality of life is not only affecting the individual, sometimes parents give up work to care for children, partners suffer from a huge reduction in normal activities is also a massive impact on finances and their family members' overall quality of life.”

@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #PwMEs

10/

Dr. Nina Muirhead:​
​
“Public health authorities have sadly underestimated the impact of ME and severe ME on quality of life and ability to work full time, this will put enormous pressure on the economy particularly if a subset of people with Long COVID have ME.”

@mecfs #MyalgicEncephalomyelitis #pwme #PwMEs #mecfs #cfs

9/

“(Contd) This would ultimately lead to better understanding and perhaps even development of treatments, and may also help to establish subtypes. Home page - DecodeME https://www.decodeme.org.uk “

#PwME #mecfs #decodeme #MyalgicEncephalomyelitis #pwmes #ChronicFatigueSyndrome #cfs #cfsme #pwme
@mecfs

7/

Dr Muirhead commenting on changes to service provision after the 2021 NICE ME/CFS guidelines:

“I do think there is more advice being given to rest and pace rather than exercise which is progress but patients want early diagnosis, social support and to be offered specialist doctor/physician led health care and medications for symptom relief rather than self management plans.​“

@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #PwMEs

6/
“The feedback data collected showed a significant increase in confidence of both diagnosis and management of ME after undertaking the module, as well as an increase in the recognition that more education and biomedical research is needed in this disease area.”

@mecfs #MyalgicEncephalomyelitis #mecfs #cfs #ChronicFatigueSyndrome #pwme #PwMEs

ME conference Oct. 11-12th organised by the patient organisations in Sweden, Norway, Finland and Denmark. It takes place in Stockholm, Göteborg and online. Speakers are: Dr Bhupesh K. Prusty, Dr. Eirini Apostolou, Dr Amy Proal, Professor Diane O´Leary, Dr Nigel Speight, Dr Anne Kielland.

https://rme.nu/forskning/konferenser/

#mecfs @mecfs #MyalgicEncephalomyelitis #cfs #ChronicFatigueSyndrome #cfsme #pwme #PwMEs

From New Zealand:

"Post-Exertional Malaise in ME/CFS - Management and Supports - Webinar for Health Professionals"

Dr Cathy Stephenson provides a 24 minute overview of PEM: its symptomatic features, triggers and management.

https://youtu.be/N2RCAthr3TA

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #pwme #PwMEs #cfsme @mecfs

The NHS must provide mandatory training on ME/CFS – @MECFSMedEd
submission to the APPG

http://surl.li/ieovd

“The doctors involved are not bad people, they simply don’t know anything about ME/CFS, and they assume (reasonably enough, one would think) that if ME/CFS were really serious, someone would have told them about it. So they fail to understand that the patients they see are in fact severely ill”

#mecfs @mecfs #cfs #pwme #PwMEs #MyalgicEncephalomyelitis #cfsme

Rebecca Watson, a commentator on science and critical thinking, has made a 10-minute YouTube video titled "Physics Girl & the Devastating Effects of Long COVID" where she also goes into the history of ME/CFS and the mistreatment of this patient group.

https://youtu.be/8x3_6YS4sZU

#LongCovid @longcovid @mecfs @cfs #pwlc #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #cfsme #pwme #PwMEs

Piece in English on new Dutch consortium that has received €7.2 million in funding for its biomedical research program

“Amsterdam UMC leads international consortium in the search for treatment for ME/CFS”

https://www.amsterdamumc.org/en/spotlight/amsterdam-umc-leads-international-consortium-in-the-search-for-treatment-for-mecvs.htm

#mecfs #cfs @mecfs @cfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #pwme #PwMEs

From #meactionnetwork:

#MillionMissing 2023 is 3 weeks away! Take a look at our Activism From Home Kit & plan how you can join in! In order to get a greater amplification of these efforts and to get THE MOST press attention for this event, we will need help from those at home. https://docs.google.com/document/d/1-JBHY9C6xrm1iP6sGgjlXdz9lnLQQ3H3BkybEpDKGdA/mobilebasic

@mecfs @cfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #PwMEs #cfsme #cfids

From #meactionnetwork:

#MillionMissing 2023 is 3 weeks away! Take a look at our Activism From Home Kit & plan how you can join in! In order to get a greater amplification of these efforts and to get THE MOST press attention for this event, we will need help from those at home. https://docs.google.com/document/d/1-JBHY9C6xrm1iP6sGgjlXdz9lnLQQ3H3BkybEpDKGdA/mobilebasic

@mecfs @cfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #PwMEs #cfsme #cfids

From #meactionnetwork:

#MillionMissing 2023 is 3 weeks away! Take a look at our Activism From Home Kit & plan how you can join in! In order to get a greater amplification of these efforts and to get THE MOST press attention for this event, we will need help from those at home. https://docs.google.com/document/d/1-JBHY9C6xrm1iP6sGgjlXdz9lnLQQ3H3BkybEpDKGdA/mobilebasic

@mecfs @cfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #PwMEs #cfsme #cfids

From #meactionnetwork:

#MillionMissing 2023 is 3 weeks away! Take a look at our Activism From Home Kit & plan how you can join in! In order to get a greater amplification of these efforts and to get THE MOST press attention for this event, we will need help from those at home. https://docs.google.com/document/d/1-JBHY9C6xrm1iP6sGgjlXdz9lnLQQ3H3BkybEpDKGdA/mobilebasic

@mecfs @cfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #PwMEs #cfsme #cfids

From #meactionnetwork:

#MillionMissing 2023 is 3 weeks away! Take a look at our Activism From Home Kit & plan how you can join in! In order to get a greater amplification of these efforts and to get THE MOST press attention for this event, we will need help from those at home. https://docs.google.com/document/d/1-JBHY9C6xrm1iP6sGgjlXdz9lnLQQ3H3BkybEpDKGdA/mobilebasic

@mecfs @cfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #PwMEs #cfsme #cfids

I have just donated to David Tuller.

I only get to read some of what he writes these days but it’s reassuring to know he's keeping a close eye on the output from those from the biopsychosocial viewpoint who have caused so many problems over the years

Donate link: https://bit.ly/40kHhkY

@mecfs @cfs @longcovid #MyalgicEncephalomyelitis #myalgice #pwme #PwMEs #pwmecfs #pwlc #LongCovid #PostCovid #PostCovid19 #cfs #cfsme #CFIDS #PostViralIllness #PostViralSyndrome

I have just donated to David Tuller.

I only get to read some of what he writes these days but it’s reassuring to know he's keeping a close eye on the output from those from the biopsychosocial viewpoint who have caused so many problems over the years

Donate link: https://bit.ly/40kHhkY

@mecfs @cfs @longcovid #MyalgicEncephalomyelitis #myalgice #pwme #PwMEs #pwmecfs #pwlc #LongCovid #PostCovid #PostCovid19 #cfs #cfsme #CFIDS #PostViralIllness #PostViralSyndrome

I have just donated to David Tuller.

I only get to read some of what he writes these days but it’s reassuring to know he's keeping a close eye on the output from those from the biopsychosocial viewpoint who have caused so many problems over the years

Donate link: https://bit.ly/40kHhkY

@mecfs @cfs @longcovid #MyalgicEncephalomyelitis #myalgice #pwme #PwMEs #pwmecfs #pwlc #LongCovid #PostCovid #PostCovid19 #cfs #cfsme #CFIDS #PostViralIllness #PostViralSyndrome

I have just donated to David Tuller.

I only get to read some of what he writes these days but it’s reassuring to know he's keeping a close eye on the output from those from the biopsychosocial viewpoint who have caused so many problems over the years

Donate link: https://bit.ly/40kHhkY

@mecfs @cfs @longcovid #MyalgicEncephalomyelitis #myalgice #pwme #PwMEs #pwmecfs #pwlc #LongCovid #PostCovid #PostCovid19 #cfs #cfsme #CFIDS #PostViralIllness #PostViralSyndrome

I have just donated to David Tuller.

I only get to read some of what he writes these days but it’s reassuring to know he's keeping a close eye on the output from those from the biopsychosocial viewpoint who have caused so many problems over the years

Donate link: https://bit.ly/40kHhkY

@mecfs @cfs @longcovid #MyalgicEncephalomyelitis #myalgice #pwme #PwMEs #pwmecfs #pwlc #LongCovid #PostCovid #PostCovid19 #cfs #cfsme #CFIDS #PostViralIllness #PostViralSyndrome

Stuff (New Zealand):

Mothers' devastation as daughters develop the same debilitating illness that can mean years in bed

"They are known as the “millions missing” – missing from their homes, the workforce, society and even their own families. Kristie Boland speaks to some of the silent sufferers of [ME/CFS], including two mums and their daughters."

https://bit.ly/41cKlRo

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #cfsme #pwme #PwMEs #meeps #meep #SEID

From Prof Leonard Jason:

I invite those with a relationship to ME, ME/CFS, and/or CFS to take this 10-15 min research survey about their views on case criteria:

https://redcap.is.depaul.edu/surveys/?s=4CCENA4KHL

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #CFSME #SEID #CFIDS #MEeps #MEep #pwme #PwMEs @mecfs @cfs

8/

““Like, what the hell, body? Seriously? This is what you’re going to get mad about? All I did was blow some notes.” She tries not to be too hard on her body, though. “It’s not deliberately being an asshole to make your life miserable,” she says. “It fights to survive. If you feel like shit right now, it’s because it’s trying.”

@cfs #postexertionalmalaise #pese #PEM #pene #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #PwMEs #cfsme #CFIDS #SEID

7/

“Pacing can be helpful but make no mistake, it isn’t a sustainable treatment. Patients need something more effective than simply doing nothing.”

#PwME #MEcfs @cfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #LongCovid #CFS #meeps #PwMEs #cfsme #meep

2 months to go

#myalgicencephalomyelitis #mecfs @mecfs @cfs #cfs #pwme #pwmes #pwMECFS

2 months to go

#myalgicencephalomyelitis #mecfs @mecfs @cfs #cfs #pwme #pwmes #pwMECFS

2 months to go

#myalgicencephalomyelitis #mecfs @mecfs @cfs #cfs #pwme #pwmes #pwMECFS

2 months to go

#myalgicencephalomyelitis #mecfs @mecfs @cfs #cfs #pwme #pwmes #pwMECFS

2 months to go

#myalgicencephalomyelitis #mecfs @mecfs @cfs #cfs #pwme #pwmes #pwMECFS

I set up this research fund in 1996.

My activism has taken many forms over the subsequent 27 years but one of the things I’m most proud of is, despite many challenges, shepherding the Irish ME/CFS Association to continue, including raising this money for research which sadly is badly needed.

#TogetherWeAreStronger

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #CFSME @mecfs @cfs #MyalgicE #PwMEs @IrishMECFSAssociation