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@anilvanderzee.bsky.socialSep 17, 2026, 6:37 PM

Vanaf vandaag is deze hand-out mét stappenplan ter ondersteuning van patiënten met post-acuut infectieuze ziektes gratis te downloaden via:

www.devragendokter.nl/webshop/prod...

#pwme #myalgicE #millionsmissing #severeME #LongCovid #lyme #QVS #postsepsis #PAIZ #PAIS #IACC

@malnutritionme.bsky.socialSep 17, 2026, 8:53 AM

The Severe ME Inquiry Report found that "People with severe and very severe #ME are exposed to clinical risks because existing systems often fail to respond appropriately to the realities of the illness."

#WorldPatientSafetyDay
#SevereME

25megroup.org/wp-content/u...

@malnutritionme.bsky.socialSep 17, 2026, 8:42 AM

People with #severeME do not have access to safe care. The Severe ME Inquiry Report found "The more ill you become, the less care you receive."

#ME #WorldPatientSafetyDay

25megroup.org/wp-content/u...

@anilvanderzee.bsky.socialSep 16, 2026, 1:07 PM

Ties en Siem (5 en 10) lopen voor hun zieke moeder met ME.

Steunen jullie deze helden en daarmee ook biomedisch onderzoek?

supporta.com/optw/1gjwl4v...

#pwme #myalgicE #severeME #MEcvs #PAIZ #PAIS #IACI #IACC #MillionsMissing

@tomkindlon.bsky.socialSep 16, 2026, 12:57 PM

4/

Extract from "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #SevereME

The United Nations Nelson Mandela Rules are regarded as the international minimum standards for the humane treatment of people in prison. They define solitary confinement as at least 22 hours per day without meaningful human contact. If it lasts longer than 15 days, it is considered prolonged solitary confinement, which should not be used because of its potentially severe health consequences (The Nelson Mandela Rules, 2015). People with ME/CFS are, of course, not imprisoned. However, the illness itself can make light, noise, touch, or conversation intolerable, and even basic needs may have to be reduced to an absolute minimum (NICE, 2021). This state can persist for a very long time: most diagnostic criteria require a disease duration of at least six months, but many people remain ill for years or even decades (Carruthers et al., 2003). This comparison helps illustrate something that is otherwise difficult to comprehend: a person may continue to think, feel, and have interests, while at the same time being largely cut off from the world and effectively trapped within their own body because of ME/CFS.
@anilvanderzee.bsky.socialSep 12, 2026, 5:58 PM

Mijn reactie op een uit de duim gezogen stressmodel voor "CVS" in Medisch Contact.

www.linkedin.com/posts/anilva...

#pwme #myalgicE #millionsmissing #severeME #MEcvs

@tomkindlon.bsky.socialSep 12, 2026, 3:57 PM

Therapy via Messaging

chroniclivingtherapy.com/insights-tex...

Screenshot from latest edition of the Chronic Living Therapy @chronicliving123.bsky.social email bulletin

#MEcfs #Spoonies #PwME #Spoonie #SevereME @lammasleaves.bsky.social

Therapy via Messaging Severe and Very Severe patients with ME/CFS often experience huge cognitive issues, as well as photophobia and other sensory impairments. This can make using screens for hour-long video therapy sessions impossible. Using the written word for therapy provides a way to support some patients who are experiencing quite extreme health difficulties. Where appropriate, this can give people access to support they badly need but can access no other way. Pamela Phillips, one of our therapists (see above), has trained in delivering therapy via Messaging and writes about her experience, sharing her reflections and some key tips. Read Insights into Text-based therapy Image of somebody holding their mobile phone
@anilvanderzee.bsky.socialSep 10, 2026, 2:41 PM

For World Suicide Prevention Day. Adult patients affected by ME are at an increased risk of death by suicide, but as a health care professional you can help instead of harm.

#pwme #myalgicE #millionsmissing #severeME #suicidepreventionday

www.mdpi.com/2227-9032/9/...

@meassociation.org.ukSep 9, 2026, 12:41 PM

** Trigger Warning: Very Upsetting Content ** Karen Gordon: Family update 

The Gordon family has provided an update on Karen’s health, as well as correspondence involving their solicitors and ESHT.

Read more: https://meassociation.org.uk/n6bj

#SevereME

@tomkindlon.bsky.socialSep 8, 2026, 11:39 AM

“Trial By Error: Newly Knighted Anil van der Zee @anilvanderzee.bsky.social Discusses his Royal Honor” By David Tuller @davetuller1.bsky.social

virology.ws/2026/09/06/t...

#MEcfs #PwME #SevereME

Trial By Error: Newly Knighted Anil van der Zee Discusses his Royal Honor 4 Comments / By David Tuller / 6 September 2026 By David Tuller, DrPH A few days ago, I posted a blog about how Anil van der Zee, a bedbound Dutch ME/CFS patient, had been awarded a royal honor in recognition of the many years he has pushed hard to correct misinformation, debunk bad research, organize educational events, and on and on. Amsterdam mayor Femke HalsemaIn presented the award to him in person in his darkened flat. In my blog, I posted a letter I had submitted in support of the community-based effort to obtain the royal honor for Anil. (Athough he is now formally a knight in the Order of Orange-Nassau, I was relieved to find out that we do not need to call him Sir Anil.) I recently sent Anil a few questions about this well-deserved award. He offered a thoughtful, nuanced and clear-eyed view of what the award means, both to him and the larger community. Below is the interview, which has been lightly edited.
@tomkindlon.bsky.socialSep 7, 2026, 1:36 PM

ME/CFS Tube Feeding Survey Report by the British Association of Clinicians in ME/CFS

meassociation.org.uk/wp-content/u...

s4me.info/threads/uk-b...

Screenshot from latest Science for ME weekly update

#MEcfs #SevereME #PwME #CFS

UK BACME ME/CFS Tube Feeding Survey Report by the British Association of Clinicians in ME/CFS. A detailed report including quotes from clinicians, carers and people with ME/CFS. The report concludes with a list of recommendations including nutritional screening; development of standardised clinical guidance; and individualised ME/CFS-informed implementation. Report | Thread
@tomkindlon.bsky.socialSep 5, 2026, 8:56 PM

6/

“Light, sound, touch, temperature, conversation, upright positioning, movement, even other people being in or near the room – all of it can be a physiologic stressor. The environment itself can determine whether a healthcare visit is accessible or harmful.”
#severeme #mecfs #pwme #cfs

@tomkindlon.bsky.socialSep 5, 2026, 3:49 PM

4/

Bateman Horne Center @batemanhornecenter.bsky.social on
“Listen. Believe. Do No Harm.”

#SevereME #PwME #CFS #MEcfs

For people with severe ME/CFS, more activity is not always the goal. Quality care may mean reducing unnecessary exertion, protecting rest and preserving limited capacity for what is essential and meaningful. In our latest blog, occupational therapist Amy Mooney, MS, OTR/L, shares practical guidance for clinicians and caregivers—including how to break everyday activities into smaller demands and adapt them around what a person’s body can tolerate. Read the blog: https://bit.ly/4zlv02i #SevereME #MECFS
@tomkindlon.bsky.socialSep 5, 2026, 3:17 PM

3/
“care should be built around what a person’s body can actually tolerate, not around what we’ve been trained to expect a patient to tolerate.”

#SevereME #MEcfs #PwME #CFS #SevereCFS

@tomkindlon.bsky.socialSep 5, 2026, 1:58 PM

I thought this by @amymooney.bsky.social was very good. Notice the audio version.

"Listen. Believe. Do No Harm: An occupational therapist’s guidance for caring well for people with severe ME/CFS"

batemanhornecenter.org/listen_belie...

#SevereME #MEcfs #PwME #CFS @batemanhornecenter.bsky.social

Listen to blog Audio Player 00:00 00:00 Use Up/Down Arrow keys to increase or decrease volume. Listen. Believe. Do No Harm. An occupational therapist’s guidance for caring well for people with severe ME/CFS For someone with severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), being sick is a full-time job. Light, sound, conversation, movement, sitting upright, eating, even being asked a question, all of it can cost more energy than the body has to spend. For these patients, healthcare itself can become one more source of exertion. That was the starting point for Amy Mooney, MS, OTR/L, when she joined Bateman Horne Center’s “Coffee” with a Clinician for Severe ME/CFS Awareness Month. Amy is an occupational therapist and a caregiver herself, and she came with a message she wanted every provider, and every caregiver, to sit with: care should be built around what a person’s body can actually tolerate, not around what we’ve been trained to expect a patient to tolerate. Here’s what she shared. BHC: What do you wish every healthcare provider understood about caring for someone with severe ME/CFS?
@meassociation.org.ukSep 3, 2026, 9:05 AM

1/2: ** Trigger Warning: Contains upsetting content **

The British Association of Clinicians in ME/CFS (BACME) have published their report on the ME/CFS Tube Feeding Survey conducted last year.

Read more: https://meassociation.org.uk/cpj9

#MECFS #pwME #SevereME