News from Belgium and Luxembourg

Management of ME/CFS in Belgium: An analysis based on patient needs, 2026, Cornelis​

Dolphin

Thread 'Management of ME/CFS in Belgium: An analysis based on patient needs, 2026, Cornelis'

Cornelis J, De Meulemeester K, Christiaens W, Jonckheer P, Savoye I, Dauvrin M, Kohn L. Castanares-Zapatero D, Budie J, Deprez G, Dobbeleers R, Olivier S, Tack M, Tas J. Management of myalgic encephalomyelitis/chronic fatigue syndrome in Belgium: An analysis based on patient needs. Health Services Research (HSR) Brussels Belgium. 2026 Jun 30; KCE Reports 420AS.

English version,
https://kce.fgov.be/sites/default/files/2026-06/KCE_420_Chronic_Fatigue_Syndrome_Belgium_Report.pdf

Dutch version...
  • Like
 
Dolphin said:
Column by Dirk Devroey, GP professor at the Free University Brussels: ME
and quackery

Dutch,

https://www.demorgen.be/meningen/de...-cvs-patienten-in-de-kou-laat-staan~bb683970/

Google cannot translate this URL to English so you have to copy the text
to,
https://translate.google.com/?hl=en&sl=nl&tl=en&op=translate
Click to expand...
Patients who do not feel heard or understood by mainstream medicine seek their salvation elsewhere, for example in non-skilled fatigue coaches or other alternative therapists. They are a plaster on a wooden leg that often harms the patient more than helps.
Click to expand...
Does he know? That this is the current standard of "care"? That those coaches are doing exactly the same thing as whatever MDs advise? That this all derives explicitly from psychosomatic ideology?
Doctors see these patients, for whom there is no adequate medical treatment, shift massively to alternative circuits. The reflex is often to warn these patients about quackery
Click to expand...
Uh, no they don't. In fact they explicitly advise alternative quackery.
Blood levels are framed as something the coach can interpret more critically or better than a doctor. Meanwhile, negative, unfounded statements are made about mainstream medicine.
Click to expand...
Ah, not anymore, not for a while actually. The coaches can now boast about "THE NEUROSCIENCE"(TM), saying all the same things as any MD would, about fear and how we're all a bunch of sorry losers who can't handle a little stress (though with more marketable phrasing).
The actual collateral damage to this vulnerable patient group is much greater than an empty wallet. What is really being sold here is a dangerous illusion of healing.
Click to expand...
I genuinely have no idea if he's aware that this is explicitly what's been the standard of care out of medicine, that in fact the fraudulent coaches did not come up with this, medicine this, has been selling this crap for decades.
Has the complaint not disappeared after an expensive process? According to the therapist, more research, testing and optimization must be done. Or worse, it’s the mindset of the patient.
Click to expand...
Literally medical textbooks say that. It's so confusing, I have no idea if he realizes it or not.
Only if regular care offers these patients a fully-fledged and scientifically based anchor, they are no longer driven into the arms of commercial quacks.
Click to expand...
Even better if they were no longer the same, a trend that is growing every single year.
 
News from Luxembourg.


Managing chronic illness ‘a full-time job’​

Stephanie Eriksson’s days revolve around medication, hydration, monitoring symptoms and balancing activity levels
Click to expand...
Stephanie Eriksson lives with POTS (Postural Orthostatic Tachycardia Syndrome), endometriosis, severe fatigue, and cognitive dysfunction and other symptoms associated with Long Covid.
Click to expand...

Life completely changed​

Eriksson was the director and manager of a large restaurant, regularly working 10-12 hour days on her feet. Active, independent and with clear plans for the future, she says her life has completely changed.

When she got ill, she had to stop working. Initially she stayed in bed for a month and could not shower, cook or eat. Although she returned to work, she noticed that she was not functioning the same as before and had to stop.

Eriksson receives financial support through job centre Adem, and is applying for an extension of that aid, but depending on the progress of her recovery, she may need to apply for disability status in the future.
Click to expand...
“I am grateful for the financial support that exists, as it has allowed me to survive during a period where I have been unable to work. However, it does not cover everything that comes with living with a chronic illness,” she said.

Treatments not covered by national insurer CNS include osteopathy, lymphatic drainage, supplements, electrolytes, compression garments, exercise equipment for home rehabilitation and supportive therapies.

“The indirect cost of chronic illness is often overlooked,” she added, citing basic household tasks including cleaning, meal preparation and grocery shopping. “These costs can add up significantly over time and are rarely reflected in official statistics about chronic illness.”

When her illness was at its worst, Eriksson spent up to €400 a month on home help, and has eaten through all her savings, approximately €15,000.
Click to expand...
Eriksson has participated for several months in Luxembourg’s Long Covid programme, which is paid for by the state. She receives group and individual support and access to exercise-based rehabilitation.

“The hardest part is that much of the illness is invisible. People often see you on a good day and assume you’re fine, but they don’t see the recovery time required or the daily calculations that go into deciding what you have enough energy to do,” she said.

The illness requires constant planning and self-management to ensure her symptoms don’t worsen, Eriksson said.

Navigating a fragmented system while searching for help needed to recover has been one of her greatest challenges.
Click to expand...
Kendall also noted that many people with chronic illnesses continue to work, but find it hard to attend multiple monthly health appointments during working hours.

“The administrative procedure to get disability is a daunting task to undertake, often requiring re-diagnosis, and an interview with a committee who decide if you have the prescribed level of disability required.”
Click to expand...
 
The article illustrates why it is so important for there to be good information about the utility of various treatments. People should not be suffering financially as a result of paying for things like
osteopathy, lymphatic drainage, supplements, electrolytes, compression garments, exercise equipment for home rehabilitation and supportive therapies.
Click to expand...
if they don't help.

Stephanie Eriksson’s days revolve around medication, hydration, monitoring symptoms and balancing activity levels
Click to expand...

Eriksson has participated for several months in Luxembourg’s Long Covid programme, which is paid for by the state. She receives group and individual support and access to exercise-based rehabilitation.
Click to expand...

Of course I don't know about this woman's particular situation and health conditions, but, for ME/CFS at least, it is counterproductive for a government to pay for exercise-based rehabilitation and then have the person be unable to carry out those basic household tasks that Stephanie talks about. A reasonably clean house and fresh food bring so many benefits in terms of health and well-being.

We need people who promote activity as a therapy to, at the very least, recognise that tasks of daily living and household tasks are activities, and, for most adults, are more important than exercise classes. If someone can't do those tasks due to fatigue, the solution is unlikely to be exercise classes.
 
Hutan said:
We need people who promote activity as a therapy to, at the very least, recognise that tasks of daily living and household tasks are activities, and, for most adults, are more important than exercise classes. If someone can't do those tasks due to fatigue, the solution is unlikely to be exercise classes.
Click to expand...
This reminds me of the physio saying that if you’re not able to fold the laundry in one go, you should fold half a shirt today, one shirt tomorrow, two the day after and so on.
 
Utsikt said:
This reminds me of the physio saying that if you’re not able to fold the laundry in one go, you should fold half a shirt today, one shirt tomorrow, two the day after and so on.
Click to expand...
My question to them is how do we do the shopping in that graduated paradigm? Go halfway to the shops and then turn back the first time? Go all the way there the next time and then turn back without doing the shopping? Go all the way there the third time and do a quarter of the shopping? Etc.

Same issue with an appointment with a doctor or dentist, seeing a movie, etc.

Some tasks make no sense unless they are completed in one go.

Not to mention that doing it the 'graduated' way ends up being more costly overall, in more than one sense.

They clearly have not thought this through, and still don't get what it is we have to deal with.
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom