Two articles about ME in the Norwegian newspaper Dagbladet today. Both are paywalled.
One is about a doctor who suffered from ME and recovered with mindfullness. She is active in the "patient" organisation Recovery Norge which promotes Lightning Process.
The other article is about the planned study on Lightning Process. The article is titled "Worried that ME sufferers will be scared away from treatment".
The article is only in the paper edition as far as I can see, but it will probably be online soon. Will share link then.
Here's a short summary:
Norway's National Research Center in Complementary and Alternative Medicine - NAFKAM - sent an alert to the Norwegian Directorate of Health a few years ago regarding Lightning Process because they had received stories from ME patients about deterioration following the treatment. March 2. this year they confirmed their assessment of the risks concerning LP.
Signe Flottorp - research director at the Norwegian Institute of Public Health demands that this alert gets retracted and that NAFKAM offers an apology.
The warning from NAFKAM is based on old and frail data. NAFKAM never checked whether the patients actually had ME and NAFKAM didn't mention "the research that shows that the LP technique can help ME sufferers".
The NAFKAM director Miek Jong says they've received several reports of negative experiences with LP. She will initiate an "expert dialogue" about LP and give their website an update, but will not retract their warning.
Jong also says that their basis for not including the LP-study from 2018 in their assessment, is the criticism it has received from several researchers. "As proof for this, she points to a text on the American journalist's David Tuller's ME-blog".
Ingrid Helland, leader of the National Competence Service for ME/CFS says there is no reason to doubt the results in the study. She says that questions were asked when the study was published, but that an update of the study has since been released where these questions were addressed.
Ingrid Helland says it's striking that this warning from NAFKAM comes now, as a Norwegian study on LP is about to start. Signe Flottorp believes there are forces behind this that wishes to influence ME research and ME treatment and that NAFKAM is letting itself be used by ME activists' fight against LP and CBT.
Flottorp also says she would not define LP as alternative treatment.
"Dagbladet can reveal that blogger and journalist David Tuller has received financial support from the Norwegian ME Association".
Professor Vegard Bruun Bratholm Wyller says it's strange that NAFKAM won't keep to facts and science. He says that most patient organisations support different kinds of research, but that the ME Association works against researchers with a more complex approach and that thinks this is also about psychology.
Another annoying article in the same newspaper from the same journalist. It was published two days ago. The article was behind a paywall and it seems it has received very little attention. Which is probably for the best, but here's anyway a short summary:
In the article Lightning Process is presented as a seminar in stress coping. A mental training program with elements from cognitive therapy, positive psychology and stress physiology.
Regional Committees for Medical and Health Research Ethics has received eight complaints about the study. This is described as a "storm of complaints".
Chairman of the Norwegian ME Association says people have reported harm from LP and that the study is not designed to pick up on such deterioration. A psychologist will be following the patients up, but why not a medical doctor?
Professor Ola D. Saugstad (an ME researcher, but in the article he is presented as an "ME debater") says he has met with several ME patients who have been told to believe themselves well again, and after a while deteriorated and ended up even worse than to begin with.
The Norwegian Society for Lightning Process rejects that participants are told to believe themselves well.
- To take responsibility for your own health, is not the same as it being your own fault that you're ill, says Live Landmark.
The researchers behind the study says the claims about deterioration is an important reason FOR the study.
- If they're right, they should be thankful that this will be thoroughly documented. It they're wrong, they should be thankful that a treatment many ME patients are trying, isn't as dangerous as the ME Association has been afraid of, says prof. Wyller.
He also says it's criticisable and unfortunate that a patient organisation is making such complaints and delaying research which can provide important answers.
- I think the ME Association's attitude to research and science is shocking. They claim to be interested in research, but being interested in research is also about being open to the truth being something other than what you think, says Wyller.
He also refutes the criticism about financial interests behind the study
- If one should stop all research where there are financial interests, there wouldn't be much medical research left. We would for instance not have had any vaccines against covid-19 if it wasn't for the pharmaceutical companies, which of course have financial interests.
Henrik Vogt says
- Several of our members have experienced improvement with LP. They want this to be researched, so that one can develop better help and so that what helped them, might become more available for those who are still sick.
