Round up of articles spotted online in June and July 2025 that focus on the experiences of people with ‘psychologised’ or hard to diagnose health conditions.
- Helen Goss’ Long Covid Parent/Carer Substack
- Dutch Doctors make a powerful educational video about ME and Long Covid
- Arte TV shows documentary, ‘Chronically Ignored’, about ME and Long Covid (still available for viewers in France, Germany and Austria)
- Coverage of the UK Government’s long awaited ‘Delivery Plan’ for ME/CFS
Helen Goss’ Long Covid parent/carer substack
Want to gain an insight into the daily trials and tribulations faced by carers of people with conditions like ME and Long Covid? Check out the eye-opening and hilariously written Substack newsletter by Helen Goss in Aberdeenshire. Her daughter is bedbound with Long Covid. It’s a wild ride from sick kittens through to school reports via ECGs and battles with bureaucracy… Buckle up!
- The ECG isn’t hard to arrange – it’s been arranged (and rearranged!) three times over the past month.
- What’s hard is getting a severely ill, dizzy, child in chronic pain, out of the house, into a car, to a GP surgery, back again, and not have her crash for the next 3 days. But yes, sure. Let’s hold her medication hostage because she can’t perform “wellness” on cue.
- This could all be resolved if NHS Grampian would just prescribe her meds that she’s already been on for 18 months.
- “We don’t have experience with prescribing this to children.” Sounds to me like a YOU problem, Royal Aberdeen Children’s Hospital Paediatric Cardiology Team – grab some Continued Professional Development points and GET EXPERIENCED. “I’m too scared” is not a reasonable excuse to not treat a child.
- At this point, I genuinely feel like I’m being punished for having a sick and disabled child, punished again for being knackered myself, and then handed a bill for the privilege.
Helen Goss writing on Substack
Powerful video about Dutch Doctors with ME and Long Covid
This video, organised and directed by Anil van der Zee (himself a former dancer who now has very severe MECFS) is fantastic. One day we’ll have something like this by therapists I hope. For now, I strongly recommend listening to these five insightful and articulate Dutch doctors talk about their journeys from healthy and fit doctors to patients with symptoms they struggled to get attention and care for. Anil explains the background to the film:
Five medical doctors open up about living with #PAIS/#IACC conditions like ME, #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before, not just in the Netherlands but possibly worldwide!
They speak candidly about their experiences with illness, what they were taught (or not taught) in medical school, and how that shaped their own treatment decisions—sometimes even leading to harm. They reflect on how becoming patients themselves radically changed their views on medicine, science, and what needs to change in healthcare.
It’s raw, honest, and incredibly insightful—for medical professionals, researchers, politicians, and patients alike.
This project was a true labor of love. We had zero budget. Three amazing cameramen, a few behind-the-scenes heroes, the MDs themselves, and those from the community who shared material for the film—all volunteered their time and energy. It wasn’t easy: illness and #PEM often got in the way, but we somehow made it.
Anil van der Zee, former ballet dancer, severe MECFS patient and film director
The subtitles are in English and you will need to agree to some YouTube cookies and so on to watch it. It is also available with subtitles in Dutch, Spanish, French, German Italian and Arabic. Further translations welcome if you have relevant skills.
Chronically Ignored – documentary
This month I managed to watch a moving and impressive German language documentary made by Sibylle Dahrendorf (she has severe ME and related conditions) and Daniela Schmidt-Langels of InselfFilm about ME and Long Covid. It was briefly available internationally on Vimeo in mid June 2025. It is a patient-led labour of love and covers the case of Maeve Boothby-O’Neill, issues around medical research funding, misinformation about the illness and treatments. It tells a complex story in a clear and coherent way and is also beautifully shot.
In France and Germany you can view it on Arte.tv
In Austria you can view it on WatchAut
Hopefully it will become available for international viewing online again in the future.
“Chronically Ignored” is an investigative documentary about a dark chapter in the history of medicine. Why has a devastating, multi-systemic disease like ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) been ignored, psychologized and misunderstood for decades?
Over 25 million people worldwide were already suffering from the disease by the start of the pandemic. LongCovid has added millions and millions more.
But nothing has changed yet: seriously ill people are still being ignored by politicians, the scientific and medical communities, the pharmaceutical industry and society and left alone without help. The same applies to those affected who are irreversibly damaged by fluoroquinolones, so-called “armored cabinet antibiotics”, and who suffer from similar agonizing symptoms.
What is going wrong in the healthcare system? The film “Chronically Ignored” is guided by this main question, interweaving the perspectives of those affected, science, politics and pharmaceutical research.
InselFilm background information for Chronically Ignored
Disappointment is main theme of responses to ME/CFS ‘Delivery Plan’ from UK government
ME organisations in the UK have expressed disappointment about the Delivery Plan for this illness, finally published after years of waiting. Adam (@abrokenbattery on X.com) created a roundup on YouTube of many of the media reports including this piece from BBC Breakfast:
For further reading we recommend the ThereForME website and campaign group (they are also marking their first year of shaking up the M.E. campaigning scene in the UK).
Read or watched or heard anything good recently?
We’re keen to share good research and other articles and news related to chronic illness and psychological support – if you find something you think is worth sharing then let us know! We’ll consider academic articles, journalism, films, book reviews etc…
