News from The Netherlands



Dutch patient is dying of starvation but medical professionals deny life-saving treatment.
@Jonathan Edwards is there anything you could do?

Here’s a revised and clearly structured version of your text, with bolded key points and paragraph breaks for better readability:

“So you're going to let me die...?”
Who’s going to help Sanne?

Sign this petition: https://ap.lc/hgZuc
(Note: "Woonplaats" = place of residence. You’ll receive an email to confirm your signature.)

The Dutch ME community has been shaken by a very urgent situation.

Sanne van Enckevort, a 38-year-old woman from Hegelsom, is seriously ill due to ME. She also suffers from gastroparesis, meaning her stomach can barely process food. Her weight has dropped rapidly — from 70 to 48 kilos.

She cannot tolerate tube feeding. Despite many attempts, she can only consume 240 kcal per day. IV fluids are barely keeping her alive.

​

TPN is a life-saving, standard treatment — nutrition administered directly into the bloodstream.

Doctors in Maastricht recognized that tube feeding was not viable and referred Sanne to Radboudumc (Nijmegen) to start TPN.

But at Radboudumc, the specialist team refused treatment.
Reason: Sanne has ME. The doctor reportedly stated that ME patients do not receive TPN, no matter how severe their condition.

When Sanne pleaded through tears, “So you're going to let me die?”, she received no answer.

This Is Not an Isolated Case

There are similar tragic cases in the United Kingdom:

▪️ Maeve Boothby O'Neill, died in 2021 from untreated malnutrition after TPN was refused.
▪️ Karen Gordon, still alive, has been receiving TPN in hospital for 1.5 years. Access to home care has been denied, and attempts have been made to discontinue her care.

This reflects a pattern of systemic medical neglect toward ME patients.

​

Her body is breaking down:

  • She faints after taking a few steps to the toilet
  • Her hair is falling out
  • She is completely bedridden
  • She is dependent on her partner and caregivers
  • Her doctor is powerless to help
Sanne is not asking for a cure. She is asking for equal medical care: TPN, just like others with intestinal failure receive.

​

A team of doctors and lawyers is now working on Sanne’s case. The media has also been approached.

Without TPN, she faces:

  • Muscle breakdown
  • A weakened immune system
  • Organ damage
  • And ultimately, death from malnutrition
Doctors mention the risks of TPN, but the greater risk is not treating her at all.

​

This is not just Sanne's fight — it's about a wider pattern of medical discrimination and neglect.

➡️ Share this story.
➡️ Raise awareness.
➡️ Apply pressure so Sanne and others are not left to die.

Sanne does not want to die — she wants to live.

Sign the petition now: https://ap.lc/hgZuc
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Is anyone on this forum able to contact her family to point them to Professor Edwards’ paper?
www.qeios.com

Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206

In the United Kingdom, a small but steady stream of people diagnosed with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have run into serious problems with nutrition because of difficulties with eating and drinking, and some have not su...
www.qeios.com www.qeios.com

I found her Instagram but I don’t have an account there: https://www.instagram.com/svenckevort/
 
7 new ME/CFS projects have received funding from the Dutch research agency ZonMw.All projects look high-quality and focus on different aspects such as the brain, muscle, microbiome, viruses, orthostatic intolerance, and the immune system.

Subsidie voor 7 nieuwe biomedische onderzoeken naar ME/CVS

ZonMw financiert 7 nieuwe projecten naar de oorzaken, diagnose en/of behandeling van de chronische multisysteemziekte ME/CVS. De projecten worden gefinancierd v
www.zonmw.nl www.zonmw.nl
 
Social media summary:


1) 7 new ME/CFS projects have received funding from the Dutch research agency ZonMw.
All projects look high-quality and focus on different aspects such as the brain, muscle, microbiome, viruses, orthostatic intolerance, and the immune system.

A brief overview
1f9f5.png


2) The first project is led by Prof. Huitinga and will use single-nucleus RNA sequencing (snRNA-seq) to study changes in the brain. It will use tissue samples from the Dutch brain bank.
It will also look at microglia, the immune cells within the brain.
https://projecten.zonmw.nl/.../single-cell...

3) A second project focuses on severe ME/CFS and will use a mobile laboratory to carry out examinations at patients' homes.
The researchers will measure inflammatory cells and bioactive peptides with a special focus on the enzyme neprilysin.
https://projecten.zonmw.nl/.../bioactieve-peptiden-mecvs...

4) In a third project, researchers from Tilburg University will compare brain imaging, blood tests, and the results of several short cognitive tests that measure thinking ability.

It will compare how these different measures are related to each other.
https://projecten.zonmw.nl/.../hoe-metabolisme-en-het...

5) The fourth project focuses on the gut flora and will use the i-screen and InTESTine™ models. These allow them to study how bacteria react to e.g., probiotics and prebiotics, and how bacteria influence the intestinal wall.
https://projecten.zonmw.nl/.../testen-van...

6) The next project aims to replicate abnormalities found in muscle tissue but also looks at non-invasive techniques, such as MRI, MRS, and NIRS for assessing muscle structure, mitochondrial function, and oxygen uptake, and how these are related to PEM.
https://projecten.zonmw.nl/.../koppeling-van...

7) The 6th project will look at the activity of viruses (B19, EBV, HCMV, HHV-6, HHV-7) in the gut and how this affects the composition of the microbiome. The researchers suspect this leads to deterioration of the gut barrier and inflammation.
https://projecten.zonmw.nl/.../virusinfectie-en...

8 ) The last project will study orthostatic intolerance (OI). It will use advanced brain scan techniques (MRI with Lower Body Negative Pressure) to investigate how reduced blood flow to the brain might explain OI.
https://www.zonmw.nl/.../fenotypering-van-orthostatische...

9) All of the projects are linked to either the Lifelines cohort or the Dutch ME/CFS Cohort and Biobank consortium (NMCB) or both.
The budget for projects isn't provided but it was previously announced that this call would have a total budget of € 3,5 million.

10) The announcement with an overview of all the projects can be found here:
https://www.zonmw.nl/.../subsidie-voor-7-nieuwe...
 
Chandelier said:


Dutch patient is dying of starvation but medical professionals deny life-saving treatment.
@Jonathan Edwards is there anything you could do?
Click to expand...

Update on Sanne‘s life threatening situation:

mecentraal.wordpress.com

ME-patiënte Sanne (38) wordt levensreddende behandeling geweigerd

⚖️ Advocaten komen deze week in actie. Jouw hulp is ook nodig!De 38-jarige Sanne van Enckevort uit Hegelsom (Limburg) is ernstig ziek. Ze heeft ME en een daardoor veroorzaakte gastroparese, en daar…
mecentraal.wordpress.com mecentraal.wordpress.com

Google Translate: https://mecentraal-wordpress-com.tr...l=auto&_x_tr_tl=en&_x_tr_hl=de&_x_tr_pto=wapp

What you can do now

1️⃣ Share this post wherever you can
2️⃣ Do you have LinkedIn? Like and share Yvonne's post: https://tinyurl.com/3pxaha94 .
-> Add as a comment: “@CooperatieVGZ, fulfill your duty of care: find a gastrointestinal (GP) TPN doctor.”
3️⃣ Do you know a gastrointestinal (GP) doctor who performs TPN? Let them read this post.
4️⃣ Do you have political or media contacts? Let them know.
5️⃣ Can you attend the hearing on September 18th in Maastricht? Come and show your support. You can register here .
6️⃣ Do you know Helen Baxter (25% ME Group), Nigel Speight (pediatrician), or William Weir (physician, UK National Health Service), the authors of the article " Life-Threatening Malnutrition in Very Severe ME/CFS " (Healthcare, 2021)? Then put them in touch with ME Centraal.
7️⃣ Do you know the relatives of Maeve Boothby O'Neill? Then put them in touch with ME Centraal.
Click to expand...
 
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@Jonathan Edwards
A valid question now being asked: Is there a British doctor who, in light of this ruling, could offer a second opinion or even be willing to start TPN?
Click to expand...
6️⃣ Do you know Helen Baxter (25% ME Group), Nigel Speight (pediatrician), or William Weir (doctor, British National Health Service), authors of the article “Life-Threatening Malnutrition in Very Severe ME/CFS” (Healthcare, 2021)? Please connect them with ME Centraal.
Click to expand...
 
@Chandelier I am very happy to be contacted by the patient's representatives. I have given an opinion on this situation in my Qeios article and can give it again.

Willy Weir and Nigel Speight are both quite a bit older than even I am. Nigel has spent a lot of time on cases like this and tends to be sensible. But this may be beyond what he can cover. I do not know Helen personally. I don't think she is a physician.

I get the impression that the representatives are raising the wrong arguments here. That may mean they get nowhere, even in court.
 
mecentraal.wordpress.com

Gebeurt dit allemaal echt…

UWV erkent ongelijk en kent met terugwerkende kracht IVA-uitkeringen toe. En schept daarmee een precedent. Gisteren was een veelbewogen dag, waarin we vooral aandacht schonken aan de rechtszitting …
mecentraal.wordpress.com mecentraal.wordpress.com
Google Translate version of the website.

AI Summary:
The Dutch Employee Insurance Agency (UWV) has acknowledged its mistakes and retroactively granted IVA (permanent disability) benefits, setting a legal precedent.

Yesterday, a significant day focused on the upcoming trial that could determine the future of Sanne van Enckevort, with news that her lawyer, Yvonne van der Linden, had made contact with Dr. Nigel Speight. Dr. Speight's involvement is expected to greatly benefit Sanne, given his extensive experience in similar cases.

In a related development, positive news reached the Dutch ME (Myalgic Encephalomyelitis) community. On May 30, JEEJAR, an advocacy organization, updated about crucial legal hearings concerning three ME/CFS patients at the Central Appeals Court (Raad van Beroep), which took place on May 28. These patients had appealed UWV decisions that considered bedridden individuals fit for work as postal workers or crane operators, just because they could work one day a week.

In early July, the Central Appeals Court announced that decisions on these cases would be made on July 17, 2025.

On September 11, JEEJAR reported a breakthrough. The UWV had made its first revised decision following interim rulings from the Court, granting retroactive IVA benefits to one client starting from September 12, 2020. This means the patient is now officially considered permanently unfit for work, with no expectation of recovery.

The next day, more good news came: the UWV revised its decision in two more cases, granting IVA benefits retroactively—one from June 13, 2018, and another from July 18, 2018.

These developments could have far-reaching consequences for all ME patients dealing with the UWV, encouraging them to assert their rights through appeals. It also raises the possibility of rectifying previous rulings where ME patients were wrongly denied benefits.

This change is largely due to the support of medical reports from Cardiozorg, and the work of advocates like John Eshuis (JEEJAR) and Yvonne van der Linden, who are helping shift the perception of ME from a psychological to a biomedical condition.

It's a momentous time, especially for those ME patients who fought for these changes but unfortunately passed away before seeing this breakthrough.
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Page by ME Centraal | @mecentraal.bsky.social

Unfortunately she will have to wait for a judicial decision for another 2 weeks, unacceptable in this case but apparently this is how the system works @swastrosarah.bsky.social
skywriter.blue

Sanne update from mecentraal on Bluesky:
Unfortunately she will have to wait for a judicial decision for another 2 weeks, unacceptable in this case but apparently this is how the system works @swastrosarah.bsky.social
Click to expand...
 
Chandelier said:

Page by ME Centraal | @mecentraal.bsky.social

Unfortunately she will have to wait for a judicial decision for another 2 weeks, unacceptable in this case but apparently this is how the system works @swastrosarah.bsky.social
skywriter.blue

Sanne update from mecentraal on Bluesky:
Click to expand...
Poor Sanne having to wait two weeks and not being able to eat? That seems too long for someone unable to eat.
 
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