I have read the news reports about the opening of long-COVID clinics for children with mixed feelings. On the one hand, I find the stories of children and young people with long COVID incredibly distressing; they are consistent with what we have seen in ME for decades. Many of those with ME are now adults, some even 60+ years old. I am glad that at least there finally seems to be more help for a small proportion of children and young people with long COVID. Hopefully this will be beneficial to all children and young people with post-acute infectious diseases (PAIZ) or infection-associated chronic diseases.
On the other hand, I read with pain in my heart that a doctor like Sanne Nijhof is given a large platform in the media. It is doctors like Sanne Nijhof and her predecessor and colleague Elise van de Putte from the Wilhelmina Children’s Hospital (WKZ) who have not only researched cognitive behavioral therapy/graded exercise therapy (CBT/GET) in their FITNET-study, but have also actively promoted and praised this treatment.
As a result, CBT/GET has been applied for years as a standard treatment for children with ME, while we have known for decades that people with ME deteriorate due to post-exertional malaise (PEM) – getting sicker after minor physical, cognitive, sensory, or emotional exertion – from the buildup of activities that these treatments are based on. It is also important to mention that about 50% of Long-Covid patients meet the ME criteria and therefore also have PEM.
This report, which describes children who fulfill the International Concensus Criteria where PEM or actually PENE (post-exertional neuroimmune exhaustion) is a mandatory symptom, reaffirms that.
Investigation children with ME about CBT/GET. OPaZ via the Ministry of Health, Welfare and Sport.
CBT N=24 :
- 54% of young people were not satisfied with this treatment because it actually made them worse.
- 1 patient thought it was the most traumatic experience ever.
- 38% had a neutral opinion about CBT.
- Only 8% were satisfied
GET N=11:
- 89% dissatisfied, caused deterioration.
It is important to note that it was not specified which form of CBT they received. Some forms are not based on building activities. This may explain the more positive results with CBT.
The report also mentions the problems with (the threat of) Safe at Home (Velig Thuis) and possible out-of-home placement that many families face. This is because they are not believed or because they try to protect their children from treatments such as CBT/GET and would therefore hinder their child’s recovery.
Elise van de Putte recently acknowledged upon her retirement that she has likely emotionally harmed at least a portion of the children with “chronic fatigue” through CBT. Unfortunately, this does not say much about ME. The figure for ME is possibly much higher due to PEM and the iatrogenic harm. Not to mention the much-discussed physical iatrogenic harm.
“She already knew back then that it doesn’t help to tell children with chronic fatigue to get off the couch – you’re not sick, you can go to school – and fully committed to behavior therapy: learning to think differently about what you feel and what your body can handle. Learning to act differently. And now, twenty years later, Elise van de Putte knows that in 30 to 40 percent of cases, that also doesn’t help. ‘I see girls from back then who never got better. They think it’s their own fault because I had said they could contribute to the solution themselves?’ Yes, she finds that very distressing. She thinks she might have only made those girls more unhappy.”
In addition, the continued emphasis on CBT/GET has meant that there has been little interest and need to conduct biomedical research. A significant proportion of patients recovered according to CBT/GET proponents, right? The money that went to FITNET should actually have been partly invested in biomedical research (Health Council 2018 Page 36 / 6.2), and could have significantly improved the situation of children with PAIZ. It is therefore also important to mention that Elise van de Putte was on the ZonMw committee for “CFS” that decided on the subsidy award. From this committee, funding has been directed to her own FITNET research.
Simin Ghatineh and Mark Vink reanalyzed the FITNET data. They came to the following conclusions:
- Recovery definition was determined afterwards and was so broad that even seriously ill patients were considered recovered.
- No adequate control group: treatments varied widely, 10% received no care. Comparison with an honest control group was lacking.
- Not blinded: participants knew which treatment they were receiving, which could influence results.
- Subjective measurements via questionnaires instead of objective outcomes, which further increased bias.
- Actometer data not published, possibly because it did not support the recovery claims as in similar studies.
- Broad CFS criteria (Fukuda) without mandatory PEM, making the FITNET group not representative of ME.
- Only 28% had an infectious trigger, while other studies report higher rates. This was therefore not a typical ME cohort.
- 35% had psychological comorbidities, CBT may improve these, which may have affected the results.
- No significant difference in recovery (~60%) in the long term, the primary purpose of the study.
- Recovery rate (63%) comparable to spontaneous recovery rates (54–94%), which suggests that CBT may have had no added value and may actually hinder recovery.
- Conclusion on “maternal focus on physical symptoms” that would impact longer term recovery and suggested that there could be an intergenerational vulnerability and interaction between mother and child confuses cause and effect, Parental concern is logical with a sick child.
The results of FITNET were therefore clearly misleading.
It is therefore not surprising that the NICE guidelines assessed the studies by Nijhof and her colleagues as being of “very low quality”.
The recently published follow-up study of FITNET also shows similarly disappointing results. Once again, in the case of FITNET-NHS, more than one million euros has been wasted, which could have been better spent on biomedical research.
In 2018, Elise van de Putte even tried to compare patient representatives on the health council committee to anti-vaxxers because they rightfully criticized CBT/GET. We already knew back then, but certainly now too, that the patients were simply right.
“Listening to patients is good,” says pediatrician and professor Elise van de Putte. “Of course you should take patients seriously. Of course you should want to know what they think of their treatment and how they are treated. But should you also let them judge scientific evidence?” She doesn’t think so. “You also don’t ask anti-vaxxers to judge the evidence for the effectiveness of vaccinations. Science is not ‘opinion’.
Moreover, many of the now proposed off-label treatments have been prescribed for years by ME specialists before the pandemic. However, these WKZ doctors have never really conducted appropriate thorough research on them. If they had focused their efforts on this, we probably would have been able to treat children with long-COVID much better by now.
It is, of course, positive that there finally seems to be more recognition for the biomedical approach within WKZ, but why has this only happened now? So within the ME patient community and among experts, this knowledge was already known. Surely, they knew too. It seems that the change at WKZ is now purely the result of scientific/social pressure. The rush to suddenly find and research appropriate biomedical treatments feels contrived, and this panic reaction we are now seeing is not only very painful, but if they had intervened earlier, also completely unnecessary.
For me, considering colleague pediatricians who have specialized in PAIZ’s on an international level since long-COVID and have moved in a different direction, and that they are only now adjusting, it feels incredibly opportunistic – an attempt to avoid losing face. One might wonder to what extent the well-being of the children has truly been prioritized over the years.
Personally, I think that an apology to the entire PAIZ community of the WKZ, and specifically from these doctors, would be more than appropriate. Likewise, to all healthcare professionals who, in good faith, have applied such treatments to their patients because it was stated as such in the guidelines, and thereby have unnecessarily harmed their patients. They should completely distance themselves from the previous treatment approach, and ME patients should of course no longer be “treated” with CBT/GET.
Unfortunately, the Cyberpoli website still praises CBT for CFS, and in a fairly recent publication, we see that Nijhof and her colleagues have still not fully reached this understanding. Both the, in my opinion, unjust positive assessment of CBT for long-COVID based on the buildup of activities, and the gradual steering towards CBT in the abstract of that recent publication, remain concerning.
Admitting that you were wrong about the treatment is really not that difficult. Colleagues in the Netherlands do it too. When will Nijhof and her colleagues follow? It has already been urgently needed for decades.
IMPORTANT:
Also fill out the survey about children with PAIS! Experiences with forms of coercion and compulsion in children with PAIS are reported regularly. The PAIS patient associations want to know more about this. Does your child have ME or another PAIS (post-acute infectious disease)? Then please fill out this survey, regardless of what you have experienced. We would love to hear all kinds of experiences!
https://vragenlijst.dezorgvraag.nl/kindmetpais
Source: https://me-cvsvereniging.nl/nieuws/enquete-over-kinderen-met-pais/
