Articles and useful links from around the web during August and September 2025. Covering Gulf War Illness, Functional Neurological Disorder, Lyme Disease and more…
- Gulf War Illness – solid science leads to a code for medical notes
- Gulf War Illness and MECFS – overlapping research and issues
- Gratitude felt towards scientists researching ‘psychologised’ conditions
- German ‘rehabilitation’ clinics, covered by The Sick Times
- David Tuller on ‘Functional Neurological Disorder’
- Lyme Disease – one family’s story of their search for diagnosis for their child
- Picturing M.E. – photographs/illustrations for articles about chronic illness
Gulf War Illness – solid science leads to a code for medical notes
The University of California San Diego shared an article celebrating the adoption of a formal medical code for Gulf War Illness. This firmly seals its acceptance as a serious physical illness suffered by veterans of service in the 1990-1991 Gulf War. Afflicted veterans have faced a long battle for their symptoms and illness to be fully accepted in this way.
Advocates hope this will change medical care for, and public understanding of, the estimated 250,000 veterans with the condition.
“This is more than just a code,” said Beatrice Golomb, M.D., Ph.D., professor of medicine at University of California San Diego School of Medicine, who led the successful ICD code submission. Golomb, who has conducted numerous studies on GWI over the past three decades and has contributed materially to understanding of exposure relations, illness features, objective markers, underlying mechanisms and treatments targeting these mechanisms. “This is long-overdue validation for the suffering of the quarter-million afflicted veterans — and a formal acknowledgment that their illness is real, physical and service-related.”
from New Diagnostic Code for Gulf War Illness Marks Major Step Forward for Veteran Care and Research
Gulf War Illness and MECFS – overlapping research and issues
Interesting to note that neuro-immunology expert, Nancy Klimas, works on both Gulf War Illness and ME/CFS. Professor Klimas has worked on guideline reviews, advocated for patients and spoken out publicly in support of both patient groups. She joined fellow scientists in demanding a public and independent review of the PACE Trial into MECFS. Familiar to many people with M.E., a British professor, Simon Wessely has also been involved in debates about both conditions – often suggesting psychological causes. He gets thoroughly lampooned in a 2023 article by Long Covid Advocacy Project which covers M.E. and GWI amongst others.
The gratitude felt towards scientists researching ‘psychologised’ conditions
The final quote in the UCSD article on Gulf War Illness is a touching one from a patient advocate. Boe Marshall speaks for many people with ‘psychologised’ illnesses when he thanks scientists for their solidarity as well as their research. Speaking about the new medical code for Gulf War Illness he says:
“We owe a debt of gratitude to the small army of doctors, researchers and veterans who made this happen,” said Boe Marshall, another veteran living with GWI. “They have worked side-by-side — in labs, in hearings and on government panels — to shine a light on Gulf War illness. This diagnostic code is a tribute to that persistence.”
from New Diagnostic Code for Gulf War Illness Marks Major Step Forward for Veteran Care and Research
In the past few months, research from the DecodeME project has received widespread media coverage in the UK and beyond. There has been the same warm gratitude towards, amongst others, Professor Chris Ponting who led the project. You can hear him talk about the research in this podcast from The Guardian newspaper.
German ‘rehabilitation’ clinics, covered by The Sick Times
Germany has a system of controversial rehabilitation clinics focused on allegedly ‘psychosomatic’ conditions. This indepth feature exposes the clinics’ psychological approaches, including the way they encourage people with ME and Long Covid to exercise and push beyond their limits. Patients are required attend these residential clinics in order to ‘pass’ the stringent tests for sickness and disability insurance payments. Many report worsening after attending such clinics, due to the exhortations to push through Post Exertional Malaise (PEM). Highly recommend this article by Sophie Dimitriou writing for The Sick Times:
David Tuller on ‘Functional Neurological Disorder’
An excellent article by David Tuller – public interest journalist and academic – funded by the ME/CFS and Long Covid community through donations. He writes for The Sick Times on how patients with Long Covid are getting shunted into a questionable diagnosis of Functional Neurological Disorder.
An important read so that you are informed if this happens to you:
By the end of the reading David Tuller’s article you may find yourself agreeing with Irish ME/CFS advocate Tom Kindon when he says on X ‘I believe a FND diagnosis => Find New Doctor’…
Lyme Disease – personal story of one family’s journey to unravel their child’s health problems
A story of medical neglect, gaslighting, desperate search for treatments and answers. Whilst shocking it is a familiar tale to many with long term health conditions.
Check out Patrick Barkham’s personal take on his daughter’s journey to diagnosis with Lyme Disease in this article on the UK’s Guardian newspaper website.
Warning – it does include some bizarre and inaccurate information about ME/CFS, ‘pacing’ (characterised wrongly, possibly due to incorrect medical advice received by the family) and more. Please search out other resources on managing ME/CFS such as Action for ME and the ME Association in the UK, as well as the NICE Guideline for this condition.
Picturing M.E. – photographs/illustrations for articles about chronic illness
When M.E. and other ‘invisible’ illnesses such as Long Covid get media coverage the images that accompany articles seem unimaginative. They are often photos of people at a desk, looking a bit tired, holding their hand to their foreheads. To avoid this I choose completely different images for posts on this website. I’ve used images like:
- a ‘roller coaster’ image for an article about how a married couple navigate the ups and downs of life
- a photo of ripples on the surface of some mucky water for an article about the ripple effects of stigma
There are times when I can’t find a (slightly daft) work around… So, I’ve collated three ‘collections’ or ‘boards’ on two major photo sharing and purchasing libraries. There are illustrations and photos on Unsplash, and a mixed board of illustrations and photos on Istock/Getty Images. Anyone can access them.
The images were already available on these image libraries. They aren’t all specifically intended to show M.E. but could be used to show a variety of levels of severity. I’ve written about it on my business’ website, and included links and info about copyright and fees. Amateur photographer, Naomi Harvey, has created some images using words related to M.E. (info in my blog post).
If you’re a therapist with a website, and want to depict people with chronic illness then you may find them useful.
Thanks for the image at the top of this page – by Conny Schneider on Unsplash
