Copied post There was a vote in our second chamber, which I guess you would call the house if you're from the US. The vote was about holding a congressional debate about long covid. There was a majority support to hold such a debate. I don't know if there's anything we can do to latch on to that, but it's mainly about the state of care for long covid patients and the lack of good research. Our health minister and his party voted against btw. And therein lies our problem with regards to the situation surrounding ME too. Willful ignorance. If we don't research long covid and ME we don't have to do anything about it. The outbreak management team supported the decision I think, estimating there are 100.000-350.000 long covid patients in the Netherlands but also saying we can't be sure because proper research just isn't done and we still don't have a clear case definition. For ME we have that(IOM, CCC, ICC) but ZonMw gets allowed or forced to sidestep it.
Some of those terms don't translate well so I don't know who is ZWiC. One million euros to accelerate research into the causes of Long COVID https://www.stichtinglongcovid.nl/news/miljoeneurovoorslc Stichting Long COVID is very happy with the donation from Stichting Zorg na Werk in Coronazorg (ZWiC). Chair Ellen Bark-Lindhout of the Long COVID Foundation: “It is very important for patients with Long COVID that 1 million euros are now available to start or continue research much faster into the causes and treatment of their disease. The researchers can get to work within 8 weeks after submitting a proposal.” The Long COVID Foundation is working on forming a partnership between researchers from University Medical Centers. This partnership, or research consortium, is partly funded by the donation from ZWiC. The Long COVID Foundation has invited researchers from all UMCs to submit research proposals. In line with the goals and values of the foundation, the project proposals should focus on speed, collaboration and solution orientation for patients. In the national consortium, researchers will collaborate intensively on possible causes of Long COVID. They will share knowledge, data and biomaterial (eg tissue, blood, urine). This will increase the impact force.
Care after having worked in coronacare basically. Which would suggest the foundation is set up for people who have become sick after caring after covid-patients.
OMG. In the Netherlands the NKCV (het Nederlands "Kenniscentrum" voor Chronische Vermoeidheid) has been ordered by the Advertisement Code Commission to change their misleading text about CBT being safe. This really made my day. Who's next? "Due to the certainty of the statement, which lacks any nuance, the average consumer is given an incorrect impression about the risks and the results that can be expected from the touted treatment of CFS as referred to in Article 8.2 under b of the Dutch Advertising Code ( NRC). Since this consumer may be led to take a decision about a transaction – treatment with CBT by NKCV – that he would not have taken otherwise, the statement is misleading and therefore unfair within the meaning of article 7 NRC." "The chairman considers the advertisement to be contrary to Article 7 of the NRC. He recommends the advertiser not to advertise in such a way anymore." Original: https://lnkd.in/ev4KwbPY English: https://lnkd.in/e7c4VgbU .
Hopefully they are willing to enforce that order because they will have to. Is there some sort of chance that this could be extended and provide a foundation? CBT is just one of the hydra monster's head, if forbidden they'd just switch to a different label and would probably respect the order. No reason to qualify DBT, ACT or LP as being fundamentally different, the claims are the same, the controversies share the same root and the intent is also the exact same.
Just to clarify this order is not enforceable but it's an important development nonetheless. Let's see where it leads to.
If they stop recruiting patients that way it's really gonna make a dent in their business. Their advertising is what made me do a course back in 2005.
Trial by Error by David Tuller: Claim that CBT is Safe Is "Misleading," Says Dutch Ad Group Quote: In a recent decision, the Advertising Code Foundation in the Netherlands has criticized as “misleading” a statement on the website of the Knowledge Center for Chronic Fatigue (NKCV) touting its treatment approach as “not harmful.” The decision is something of a slap at the NKCV and its co-leader, Professor Hans Knoop, a psychologist and a member of the Dutch wing of the CBT/GET ideological brigades.
From: Dr. Marc-Alexander Fluks Subject: WebTV: Post-Covid - Research and Treatments (in Dutch) Programme: Focus (Science Programme) Station: NPO-2 TV Date: Part 1: June 24, 2023 Part 2: July 1, 2023 Time: 18:10-18:35 UTC WebTV: https://www.npostart.nl/live/npo-2 Rerun: https://www.npostart.nl/focus/24-06-2023/VPWON_1344838 https://www.npostart.nl/focus/01-07-2023/VPWON_1344839 Item: Post-Covid - Research and Treatments (in Dutch)
Very tough to follow if you're not Dutch..... Luckily I am! Emphatically done, lot's of implicit mention of PEM. Interviewer: Normally you'd expect people to get better after exercise. Researcher: Yes, but Post Covid patients actually get worse. And that got repeated a number of times. One of the researchers explained what PEM is, a lot of the symptoms got covered in the first few minutes and I was already getting a bit antsy about PEM not being mentioned. The rest of the episode more than made up for that. There was a long section about oxygen therapy. How expensive it is, how it might not help everyone, how a lot more research is needed. I felt a bit iffy about how long that segment went on for. I feel a lot of people are gonna want to try it, whilst it is for as far as I know very expensive and unproven as of yet. But other than that it was very good. The stories will have sounded very relatable for all of the patients on this forum. The explanation of PEM was good. The urgency to research more was brought across well, I felt. Might've been the best thing I watched on regular Dutch tv regarding LC or ME(which didn't get mentioned).
Part two of the documentary was on tv last night. Again very emphatic. Further emphasis on PEM, one of the women told that her physio was trying to build up her strength or endurance or something and that she just couldn't do it. The doctor sitting at the table with her explained how physio's would want to help but in doing so they actually made patients worse which might be my favourite bit of the documentary. It really seemed to hammer home the point that even with the best intentions you will be harming patients if you put them on regimes aimed at exercise or increasing workload.
There were some bits about the science behind long covid again. A sports scientists had become intrigued by how different long covid patients responded to exercise. He had done muscle biopsies after exercise on both patients and healthy controls. He was able to show differences between the biopsies, patients had very few cells that could feasible handle the stress of exercise. The presenter did a good job of driving it home by getting on the exercise bike herself, the researcher stopped her after a very short time. He went on to say, this is about the maximum long covid patients can do. After this they really are exhausted and it can take them up to two months to recover. The presenter pointed out that she barely felt anything yet and was amazed at how little we could actually do. She then went on to say if this small amount of exercise can cause you to need to recover for two months, then you can't do anything really. She seemed distraught at the idea of how little patients were able to do. She also pointed out to the researcher how patients often encounter disbelief or people saying it's all in the mind. The researcher went on to explain how their work proved that it clearly wasn't.
There was another group of researchers that researched brain inflammation that conveyed how startled they were with what they found. They had always found inflammation in the deceased and had replicated the findings with some sort of brain scans in the living. They hammered home how distraught they were at the finding, how serious it was. There was a link being made to brain fog. The information about the research projects was being relayed to patients who then pointed out, oh know I now where my brainfog or my inability to do much during is coming from.
The presenter and the program really did a wonderful job at weaving it all together. The dread patients where feeling about losing their ability to participate in life. There was a girl for example that talked about dating and how challenging that was. She wanted a relationship but her potential partner would have to be very very patient, which was something she dreaded. Just the thought of having to meet the family of her potential partner seemed to be putting her off the idea. She also said that she sometimes thought about not bothering with it because she wanted her potential partner to be able to hook up with someone with more energy. There was a mother with small children, she told about how her youngest came home from school after a short vacation. After vacation at school it was normal to talk a bit about what everyone did, and all the other kids were going to amusement parks etc. How come they didn't do that anymore. The mother conveyed very well how that obviously made her feel. There were other similar stories with a nurse that had lost her job and the friend of the presenter that sorta disappeared from social life. All very well done.
The program imo did very well to convey how serious the disease was. The friendly doctor that was a feature throughout the show ended on a positive note with saying how much was worked on, it was in a talk with two patients who immediately perked up. They said that gave them hope, to which the doctor pointed out how slow progress is and while a lot is being tested it's gonna be a while before actual help arrives. I think there was a point being made that a bigger effort to research the disease was needed but I can't be sure anymore. All in all it were two great half hour features though.
