NETHERLANDS

Below are a selection of interviews with people affected by ME in the Netherlands ahead of my trip there next month.  Here's what they told me...

*For Dutch translations please click here

Anil Van Der Zee from Amsterdam:

• How did you get ill? 

I was working in Switzerland as a dancer. I walked in the street with a friend of mine and my intestines started to act up after too much coffee. I felt dizzy, like I started to get a fever. I was diagnosed with a Cytomegaloviral infection and never recovered. That was in 2007. 

• How were you diagnosed?   

It took about 2 years to get a diagnosis in Amsterdam at the CVS/ME Medisch Centrum. I did an exercise test and all the exclusionary tests to rule out any other diseases. After that the diagnosis was confirmed in Belgium and 2 other places in the Netherlands. 

• How does this disease affect you?

I was moderately ill for the first 6 years. I'm now severely affected by the disease. I think I spend about 15 minutes per day vertically. 2016 was a very heavy year. I lived in an old house where my upstairs neighbours had a small child running non stop. I couldn't process it and was in a PEM crash 24/7. I went from being able to cook a bit to being bedbound. I wasn't able to process people in my home at all. It would make me worse for days even without seeing them.

​So I spend about 11 months in total isolation. No phone calls, Skype, videos, radio, no light no sound. I just get up to get food very quickly and toilet visits.  I moved to another place and have improved a bit. My friend comes to bring food and waves quickly and leaves. It's a big improvement. I can push myself for longer visits but they are intense. But I'm hopeful things will keep improving. 

• What’s the hardest part about having ME? 

Any exertion makes you more ill for days. Any excitement. I think the worst is that there is no real help. Right now the disease is caught up in politics rather than good care. I think that's the hardest part. You're really left on your own as a patient. 

• What is your doctor’s perception/understanding of ME/CFS? 

I'm very fortunate, my GP is very willing to try treatments . I also have a specialist doctor; Visser. He's a cardiologist. With the both of them we try to manage the illness as best we can. 

• What treatment is currently prescribed to those suffering? 

The Netherlands is very much like the UK as our guidelines are based on the NICE guidelines and PACE. So it's CBT and GET…. 

• Do patients receive adequate support and benefits? 

It depends on what doctor you see. What he/she believes. I was denied help for cleaning as it was considered anti rehabilitive and a house because a psychologist told me that he didn't see anything wrong with me or my situation. Financial support went well but for many it's very difficult, more often than not people even need to fight it out in court. Very sad. 

• What changes would you like to see to the treatments currently proposed in Netherlands?

In the PACE-trial protocol it's written that it's based on 3 studies and 1 is from the Netherlands. So we have the exact same problem with CBT and GET like the UK does. If you go to a doctor the guidelines advices doctors to recommend CBT and GET. And advices against any pharmaceutical interventions. You know “primum non nocere”? Although patients do benefit from pain, sleep medication and medication to treat autonomic nervous system issues like orthostatic intolerance. As many people with ME suffer from this. This needs to change and medical students need better education that especially GET can potentially permanently harm patients. More often than not patients end up educating clinicians which is not really how it should be. 

• What does the future look like for ME/CFS patients in Netherlands? Is there reason to be positive?

Currently the health council is trying to come up with a new commendation/guidelines for this disease. Sadly there are quite a few MUPS and PACE-trial proponents but they are a younger generation. And they are basing their recommendations on the IOM report. So that might be a good thing?

The best part is that we are starting to get support from outside the patient community. Clinicians, politicians and journalists are starting to take notice about the PACE-trial and how the current treatment for this disease just doesn't add up. And they are joining with voicing their concern. I see some light at the end of this tunnel. I am very carefully optimistic. 

Anil is crowdfunding for a sound isolation cabin - click here to help him

​Frank Twisk

My name is Frank Twisk, in a previous life I was a Project Manager, Business Administrator and Information Scientist, Mathematician and Higher Education Teacher.  And also an enthusiastic football player who just missed making the Dutch national team.  I have had ME since 1996.  I’m a medical refugee in Belgium; thanks to Prof De Merleir I have improved somewhat.  I have my own website and I am a writer and activist out of necessity. 

Just like many patients, I’ve had to give up so many things. From being a higher education teacher and writer I became a loser and layabout with an imaginary disease.  From being a very active guy, I became a couch potato.  I went from an academic level of intelligence to an IQ of 100.  From having a social life to having an isolated life, being a medical refugee in Belgium and a person who lost a small fortune in personal income.

During the first few years I tried to find answers in the medical world but to no avail.  I then decided to look for answers myself. I started to write medical articles myself resulting in a number that could be called rather controversial, not in the least because they take a tough line on CBT and Wessely.  If we look at the battle for ME and for the truth, we can see that the arguments put forward by the community are being increasingly disregarded. Apparently the free market has entered the medical sector as well. The sales force behind the evidence based approach wins the battle every time.  The media are not entirely without fault either. They just repeat the established order’s sales talks or so-called press releases without question.  This is partly because journalists often lack the time to do their own research, I find it incomprehensible how all the proof of biological abnormalities is just being swept under the carpet and also how psychobabble is given free rein in the Netherlands.  Patients often write letters to the editor. Apparently paper arguments are insufficient to win this battle.  We will have to be more creative in trying to defeat our opponent. 

For a better future I believe we need a number of things.  First of all a clear distinction between ME and CFS.  ME and CFS are two different things. ME has been described by Ramsay and we should not tamper with this. ME symptoms such as muscle weakness and memory loss are not required for a diagnosis of CFS.  Yes I am chronically tired but I am chronically tired of fatigue clinics, fatigue apps and fatigue experts.  No I am not tired, I want to play football, I want to read, I want to play. In order to find a solution we will have to take a step back to basics. This means the symptoms and diagnosis.  We should stop using questionnaires. My expert advice would be to test, test and test again. Terms such as ‘exertion intolerance’ are too vague to be put into questionnaires.  We have to make sure that disbelievers can no longer continue denying the problem.  And this we can only achieve by having well-defined and solid symptoms. Considering the scientific developments, I feel fairly optimistic about the future.  But on the other hand I have already been waiting for 18 years. Making a scientific breakthrough is a matter for scientists, but this does not mean that patients should sit back and wait for things to happen. We will have to be more creative in attracting attention to the problem and putting it on the agenda. It’s time for fresh and renewed vigour or I will give the same talk again in 18 years time.

Taken from ‘ME and my life; past, present and future’
https://goo.gl/ZZBSCS

Rob Wijbenga from The Global ME Chronicle and ME Centraal

• What’s your experience of ME?

At first instance, my experience with ME was just on a caregiver-level, not on a scientific or informational one. When I first met what later on became my second wife Karen, she seemed to ‘just’ suffer from lower back problems. After each of three operations on her spine initially she seemed to recover but after six weeks totally collapsed. At last in early 1997 she became totally bedridden and her symptoms increased fast both in intensity and duration. Until her death in Sept. 2010 she had just one single moment without pain, can you imagine….

After her death I became involved with the Dutch ME/cfs Association and was elected chairman in the fall of 2011, a position I held until Nov. 2014, having completed the statutory period of three years. During that time I started the ME Global Chronicle (https://www.facebook.com/groups/TheMEGlobalChronicle/) with my dear friend Eddy Keuninckx from Belgium at the start of 2014 and thanks to the effects of the government subsidized project Science to Patients (https://www.facebook.com/groups/TheMEGlobalChronicle/), for which I interviewed major ME-researchers from all over.

On the 8th August 2016 (Severe ME-day) together with two patients I started the Dutch wall ME Centraal (https://www.facebook.com/MECentraal/) adding a site on 8th August of this year, with until now a modest English section (https://mecentraal.wordpress.com/english/).

• What treatment was prescribed for Karen and how did it affect her?

Our GP (like almost all GPs in Holland) had not an inkling of ME.  ME is a multi-system disease and if you intervene in one system you can easily create problems in the other ones. To my view and experience that’s why it is so extremely complicated to treat ME-patients, as the underlying pathogenicity and possible triggers/pathogens are still unknown. At least in Karen’s case (but afterwards I heard and still hear of many other patients) invariably each intervention with drugs after three days of hope made her relapse severely. I cannot even begin to describe the 24/7 hell of pain she went through each and every day, lying in bed in a dark room with a devilish neighbour all day long crying instead of normally talking and her tv playing at full volume in the adjacent room until 2 am, until death took pity on her.

• What support did you get from doctors, clinics or the authorities?

Hardly any. We were left on our own because like in almost all patients tests didn’t show anything irregular. From the very start I decided to leave my job and take care of her and somehow we managed financially, due to the good social welfare system in Holland and some financial help of her father. But many other patients who aren’t so ‘fortunate’ as to be ill that severe, don’t even get that kind of allowances. When she underwent a nerve conduction research our GP wrote in the indication that she was suffering from a severe sensitization syndrome, in other words strongly imagined her symptoms and pains. And this is a purely technical examination so that speaks for itself of what he thought about her condition. And as you know your GP is the gatekeeper to all specialist care.

• Can you tell us more about the ME Global Chronicle?

Building bridges is one of my main qualities I can state without boasting. Due to the project Science to Patients I not only got in contact with the researchers I interviewed but also with patients and patient organizations from all over the world.

Right from Karen’s death I got the strong conviction the reigning powers over the disease ME -the biopsychosocial approach and its exponents – had been able to hold the reins also due to isolation of patient communities. The actual and current bundling of powers of patients from all over the world seem to confirm that point of view.

So in the autumn of 2013 I decided to send a sketchy newsletter to all the email-addresses the videos were sent to on a regular basis, with news from the countries I was able to lay my hands on. Eddy came in and also Janice Roseingrave from New Zealand and David Egan from Ireland and in 2014 we started the Chronicle. Janice and David left and Eddy and I remain until now. Eddy mainly creates the beautiful lay-out and I mainly provide the articles from all over, categorized in different sections. The magazine has become mature and more and more people and important organizations start appreciating it and are sending us submissions for issues to come.  Leonard Jason advised us to go bimonthly (one issue each two months) after half a year of publishing monthly which proved to be much more practical.

Subscription is free and can be effectuated by just letting know you’d like to receive the magazine on subscribe@let-me.be

• What changes would you like to see to the treatments currently proposed in Netherlands?

Speaks for itself that following the IOM-report and the AHQR report, especially the addenda and the subsequent withdrawal of CBT & GET from the site of the CDC and the NIH, combined with the debunking of the PACE-trial, the criticism of patient organisations in the UK at NICE’s decision not to review their guidelines towards the end of this year, and NICEs/NHS’ decision to fully review the guidelines, the government and Health Council of the Netherlands have no option but to follow suit. The occasion is also there, the Dutch community having collected over 56,000 signatures to recognize ME as a biomedical disease and the parliament due to that initiative having requested the Health Council to review the state of affairs re ME in Holland. I’m a member of the ad hoc ME/CFS committee of the HC to do so, but patients rightly submitted a new petition (ME isn’t MUPS, which can still be signed (http://bit.ly/2e2Nsq7) to the HC on 18th Sept. to change the composition of that committee.  Too many seats are occupied by allies of the British BPS-clan. Which is of course a guarantee to keep things as they are (the current Dutch guidelines re ME, called CFS, are cloned from the NICE-guidelines and propose CBT and GET as unique interventions). So the positive outcome of this HC-process can be doubted, but we’ll see during spring next year.

• What practical things can people in the Netherlands do to help effect change?

I don’t know how the situation is in the UK and in the States and Canada and Australia, but there are few patients actually involved in patient advocacy in the Netherlands. This most probably is inherent with the disease. Patients prefer to spend the little energy they have at their disposal in things they like, not in coming up for their rights as patients of an unrecognized disease. The very few which are involved however are severely affected themselves, strangely enough. Healthy ones like you fighting for ME-patients are very rare over here. There’s the father of a patient writing fierce blogs against the BPS-exponents and approach, having seen his daughter deteriorate due to the interventions they preach. Then there’s an uncle of a deceased patient who’s a most active advocate and is organizing a Dutch version of Walk for ME. That’s about all.

I dare to say both the wall and the site of ME Centraal and the wall of the Dutch section of Millions Missing (https://www.facebook.com/MillionsMissingHolland/) are the best and most active representatives of patients’ efforts to move things into a different direction and are receiving more and more appraisal of the patients themselves, thus involving them. As even liking one article on these social media implies patient advocacy, to my view.
 

• What does the future look like for ME/CFS patients in Netherlands? Is there reason to be positive?

Actually you can draw the conclusions to this question from the aforesaid. It greatly depends on what is happening abroad, especially in your country and in the USA, also in the field of research discoveries. That’s why actions like yours, supporting Invest in ME’s research programs, and actions of several patients in Holland to support the End ME/CFS initiative of the Open Medicine Foundation are of vital importance. Not so much in terms of the amounts of money being raised, although it is virtually amazing what you guys manage to do in the UK, in financial goals reached. But more so in terms of patients expressing their support and gratitude to those few researchers who persevere in trying to find the solution and keys to this horror disease which is claiming an unknown number of deathly victims, having suffered in the dark for years. Like Karen did.

I think we all should try and highlight much more how deadly this disease can be, to have the same success as the AIDS-movement did in the 80s and 90s and have ME recognized as a major cause of untold suffering and human tragedy. Which is one of the responsibilities of the individual man towards mankind.