Very problematic book published in Sweden this week "Morden i Bjärred - och andra sanna berättelser om föräldrar som mördat sina barn" [The murders in Bjärred -- and other true stories about parents who murder their children] by Elisabet Höglund. As some of you maybe remember, what happened in Bjärred was that two children with ME were murdered by their parents who then killed themselves. Threads here and here. I haven't read this book myself and I would most definitely NOT recommend it to others, but it might be good for us to be aware that it exists. Höglund has published many horrible articles and blogs over the years on various controversial topics, she's quite well known. I read someone else's comments on this book, and apparently it contains ME related content based on, among other things, an interview with the very controversial BPS-extremist/ME denier Mats Reimer and info from the BPS lot in Norway
We're still waiting for his analysis of PACE, that he promised about four years ago, aren't we? We doesn't seem like someone with an imprssive grasp of the details.
Distressing Facebook post from MillionsMissing Finland ***** PLEASE SHARE ***** _ Finnish children with M.E. have increasingly started to be taken into care by the state against their own and parents will. _ Yesterday Iltalehti -newspaper reported on a 15-year old M.E. patient, Petteri, who was taken from his parents by social workers accompanied with police patrol. _ https://www.iltalehti.fi/…/0181a2f6-f16b-47e7-9003-a940b344… _ This Friday 15 year old M.E. patient, Sanni was taken into care against her and her mother’s will. _ There are other cases too and multiple families with children with M.E. in Finland are in under a threat to loose their child. Families struggle to protect their children`s appropriate treatment for M.E. on private sector and secure their wellbeing in safe home environment to handle the extremely difficult disease that requires for example absolute silence and darkened room. Those families that are financially able to, hire lawyers. _ PETTERI _ One morning on a scheduled visitation social workers appeared at the door of Petteri’s home surprisingly accompanied with police patrol. Petteri was taken into care without warning and is now been placed in a child welfare institution. Petteri is not treated there according to his illness. _ Petteri`s parents are been accused of neglecting their child`s physical and mental care. Doctors have stated that as the test results don`t show any physical explanation to Petteri`s symptoms and condition, the reason has to be psychosomatic and they have interpreted that Petteri`s symptoms worsen specially in presence of his mother. _ The child care officials have gone even further with their obscure theories without any medical knowledge about M.E. blaming Petteri`s condition to be caused by a video game addiction that keeps him up at nights. Petteri’s mother objects telling Petteri’s condition allows Petteri to play video games and watch Netflix only on rare occasions. _ Petteri got ill with M.E. in 2017 and was diagnosed with M.E. by HUS, Helsinki University Hospital in 2018. Due to M.E. Petteri could not attend school and a teacher was visiting Petteri at his home once a week. _ Petteri has been now in a child welfare institution for multiple weeks and first the family was allowed to visit him daily. But now the visitations have been limited to twice a week as the officials blame that Petteri`s mother`s "worry behavior" causes worsening of Petteri`s condition. _ Petteri`s family has a lawyer working on getting Petteri back to his loving family. _ SANNI _ Last Friday child protection authorities in Tampere made an urgent decision to place 15 year old M.E. patient, Sanni, into care against her and her mother`s will. _ Tampere University Hospital (TAYS) Neurologist decided to hospitalize Sanni over the weekend, where she is right now. Her condition has worsen since. _ Child protection authorities are planning to transfer Sanni into a children`s home tomorrow, on Monday. They list as reasons for this extreme caution the treatments Sanni receives from the private health care sector: oxygen treatment, saline iv and low dose naltroxen. _ Sanni doesn`t receive any treatments for M.E. from the public health care sector. Her mother does her best for her child`s wellbeing and pays for treatments on private sector that are commonly used for M.E. internationally. _ Sanni dreams on getting better and going back to school. _ Placing Sanni in children`s home would danger her growth, development and safety. _ A demonstration has been organized to save Sanni, it takes place tomorrow at TAYS-hospital 2pm. _
One hopes that suitable undertakings have been given to the courts that the children will improve while under the care of the state, and that sanctions will be imposed if they do not.
These are the things that worry me. As I see it the problem here is that because of disagreement between health care professionals children and young people are being taken into care. That cannot be right. If there is justification for discontinuing the treatment received in the private sector then the private physicians providing it should be forced to stop providing it, rather than the patient being taken away from home. And I think some of the responsibility lies with the parents. I am certain that it is not ethical to prescribe the treatments mentioned to minors. IV saline and oxygen are not appropriate for ME/CFS. Low dose naltrexone probably is not either. Parents need to be aware that private physicians can recommend inappropriate treatments and have a responsibility to protect their children from these. It may be very difficult for parents to see the wood for the trees, especially if the alternative is a psychosomatic diagnosis, but in the end we all have to make reasonable decisions about those we have a duty of care to. I think that there should be much stricter laws that prohibit the prescription of inappropriate treatments for minors. There will always be difficult calls for a few things but the treatments mentioned are easy enough to categorise. Who is prescribing these things? Why are they not the target of the intervention rather than the child?
I am not sure how this fits in here. My point about things like IV saline is that not only are they not based on any evidence or any credible science but they are presented as some sort of alternative to conventional care that drives a wedge between professionals and ends up with disastrous consequences for the child. The prescription of amitriptyline in the NHS does not do that. It may be useless and unpleasant but that is a different level of problem. I checked to see evidence for use of amitriptyline in children. I assume it is used for helping chronic pain and regularising sleep in that context. It looks from the reviews that there is no good evidence. Interestingly the evidence for adults seems just as poor but the Cochrane review still recommends it for adults but not for children. I would certainly be against using it in children but I don't think the fact that NHS practice is bad in any way excuses bad practice in private care that has an additional, much more devastating knock-on effect. Private physicians should not be putting ideas into parents' heads such that they are disbelieved by health service professionals and the child comes to harm as a result
I could find no evidence either, and no indictation of how brain development may be affected from long term use, or how mucking about with seratonin ( and dopamine for other antidepressants) in puberty would pan out. That said there is very little evidence for many prescription medicines in children - a bit concerning when children may lack the capacity to describe any side effects. It would seem to be prescribed based on clinical use. With ME, many paediatric comorbidities, which may benefit from some interventions are neither acknowledged, nor therefore resourced- the use of some (eg IVIG ) has been used by Dr Speight on severe cases with positive effect. The interventions which Dr Nina Muirhead based her improvements on ( injection of B12 and antivirals) do not have a robust evidence base, but do seem in practise to make a difference for some whose onset was viral. Not a cure, but an increase in function. This may plateau, but any increase can be a hugely positive thing. If we have no means of sub grouping the heterogeneity, and retain Fukada as a diagnostic tool, then we may forever have a lack of demonstrable evidence based efficacy. Sorry to take this a bit off topic. Long night and not enough coffee
The trouble is that is exactly the same argument as used in the Cochrane review for amitriptyline (* see below) - no evidence but sure it must work sometimes because people got better. I think we have to move away from that. We have to see that IVIG, GET, antivirals, CBT, amitriptyline and IV saline are all in exactly the same boat - poorly evidenced treatments without any very plausible rationale. We cannot pick and choose the things that sound good. A few people getting better after using a treatment is not useful evidence for anything. The key difference for me is that using 'unconventional' treatments divides the health professional community and that harms children. In other respects all these treatments are much of a muchness but physicians have a responsibility to see the unintended effects of their actions. *Conclusion: Amitriptyline has been a first-line treatment for neuropathic pain for many years. The fact that there is no supportive unbiased evidence for a beneficial effect is disappointing, but has to be balanced against decades of successful treatment in many people with neuropathic pain. There is no good evidence of a lack of effect; rather our concern should be of overestimation of treatment effect. Amitriptyline should continue to be used as part of the treatment of neuropathic pain, but only a minority of people will achieve satisfactory pain relief.
If something does have clinical effect, then surely there should be well designed trials, which may also help re mechanism? Apologies if being naive. My main concern is that the combination of Fukada and no subgroups may render any trials meaningless.
But 'having clinical effect' implies a cause and effect relationship, which cannot be deduced from single cases, only from formal trials. So there is never a case of having clinical effect before the trials have been done. I don't think subsets are likely to be relevant. The trials have to be done. If a subset responds that is likely to show up in the whole trial, although the level of effect will be blunted. The subsets argument is repeatedly used by people doing poor trials to try to explain why they have not got the result they quite wanted. Post-hoc subset analysis is the classic cherry picking way of trying to prove something worked when it didn't. And as far as I know we are talking about treatments where no decent trials have been done anyway. There were some attempts at proper trials of IVIG, some of which suggested an effect, but they were small. I think the open label trial of rituximab shows just how unreliable clinical improvements following treatments can be. In the open label extension of the phase 2 study a number of patients repeatedly showed dramatic 'responses' to rituximab yet in the final blinded trial it became clear that the drug has no effect. This is the whole reason why we have formal trials it is so easy for both physician and patient to be fooled by wishful thinking.
I think subsets may be relevant given the varying comorbidities and how this may factor in - eg different forms of OI, allergies/ MCAS/IBS. For B12 then genetic polymorphisms may be worth knowing pre trial. Would pre identification and subgrouping not enable finer teasing of info? I don't have a scientific background so I may have missed the point. Apologies if this is the case
It isn't really so much a case of subgrouping as of trying to pin down what physiological abnormality you think you might be wanting to address and then picking those with evidence of that abnormality. So in that sense 'diagnoses' like ME are actually blunt instruments. When I set up trials in inflammatory arthritis the name 'rheumatoid arthritis' was not really what I was wanting to target. (I wanted to target B cell dependent arthritis, which is not a clinical diagnosis and never will be.) If it is thought that a group of people have a particular blood volume problem then it would be reasonable to do a trial of something that affects blood volume. Whether or not they also fall under 'ME' may not matter, although it would if the volume problem is thought to depend on some particular physiological drive that would fit with ME but not with other cases. The science is complex but based on common sense. What should not be going on is private phsyicians trying a bit of this and a bit of that under conditions where nobody can interpret the outcome.
Johnathan, how does a clinician determine when to try rituximab in inflammatory arthritis? Are there simple blood tests? I am actually wondering if it is a clear and simple process or not...
It is basically a matter of finding evidence of abnormal antibodies that can reasonably be linked to the arthritis. For rheumatoid factor or anti-citrulline antibodies, which are highly specific for inflammatory arthritis the situation is very straightforward. If these are not present further routine tests like immunoglobulin levels may show that antibody production is disturbed and a judgment can be made as to whether this is likely to be relevant. For cases with no evidence of antibody changes the justification for treatment has to rely on a perception of urgent need and a weighing up of probabilities. usually other options are moe sensible. The arthritis needs to be severe enough to warrant major treatment but that is not particularly complicated. There does nee to be a lengthy discussion with the patient about benefits and risks and what you hope to achieve and expect to happen without treatment.
IV saline is most likely given specifically to help POTS symptoms and increasing blood volume, so wouldn't that be a very plausible treatment rationale, given that saline directly increases blood volume? For some reason, almost every ME/CFS child patient reported in the news here in Finland seems to have co-morbid diagnoses of POTS, EDS, PANS, etc. There is one a hyperbaric oxygen clinic in this country, which is most likely where patients would get oxygen treatments from. The clinic website indicates their treatment is mainly for certain wounds, poisoning and decompression sickness. They go on to list sudden hearing loss, tinnitus, fibromyalgia, ME/CFS, autism and Lyme disease as "empiric treatment" conditions (difficult to translate from original, but something like therapy based on experience). Anyway, I know kids in Finland are not being offered IV saline or oxygen from a bunch of doctors treating ME/CFS, because the few doctors who used to see ME/CFS patients have all lost their license. Since there is no ME/CFS specialized doctor left, patients and parents of patients move to these clinics or whatever place they can to get some kind of treatment. Desperation? Sure, but IMO taking down some oxygen clinic or place for IV saline infusion and next step is people seeking much more dangerous treatments from abroad.
