Discussion in 'General ME/CFS News' started by Kalliope, Nov 2, 2017.
Maybe Sharpe thinks LP adds evidence in support of the cognitive-behavioural model of CFS.
Ironically, it destroys one their very last remaining argument about some "special sauce" that only they know, that anyone harmed by such treatment simply didn't get the proper treatment that they carefully crafted (aka made it all up). They have to certify the training, supervise it even, because it's just so super special. At least that's what they say, nevermind that they recognized in PACE that this could not scale up and that it fails everywhere no matter what, including in their own fake clinics.
If some random jackass who claims he can diagnose people with hover hands and tarot cards puts out his STOP mat and roughly accomplishes the same cherry-picked heavily-biased self-reported outcome, then the PACE treatment they invented, and allegedly was a big part of why PACE was so expensive, is no more credible than just yelling at your symptoms.
So in the spirit of a famous quip: please proceed, professor.
'Look at all these people getting healed from ME by psychological methods"
At least that's how our own lot over here argues when referencing recovery norge stories. Oh - and also - 'look at all these people getting cured from their ME, those pesky ME-activists are obviously lying about ME beeing chronic illness' :-/
Another version is something like this:
“Well I don’t know if this works for everyone or anyone, but at least these patients are willing to do something about their situation and listen to professional advice. That’s what’s most important here!”
MillionsMissing Stavanger is fundraising for their May 12th event and for research into ME by Fluge/Mella and their team. The fundraising will be going until May 12th. There's a webpage at bidra.no where people can contribute via card donations and Vipps. The event at May 12th is already mostly fully financed, so a support to this fundraising will mainly be a support to Fluge/Mella's research work.
Update from The Comeback Study, a study on ME and faecal transplantation.
This was one of 4 research projects that received allocation via the Norwegian Research Council's pilot project on user identified research. The study is taking place at Harstad in Norway.
It says (hastily translated by me):
Hi. Apologies for this late update, but here is a status on the trial per now. We've run a pilot study and the next step is to begin inclusion of participants for the main trial. The reason behind this has taken longer than expected are different factors concerning selection of donor and to build up a sufficient number of donor transplant. There is very strict regulation concerning donor selection, which is time consuming. The process is still ongoing, but it looks as if we're able to include participants starting in May. The inclusion process will take a few months (with a summer break), so some might not be contacted until the autumn. We'll publish a new status on this page once all participants are included. If anyone have questions you can send them as PM, and they will be answered as soon as possible. As inclusion is ongoing, people can still get in touch if they want to take part in the trial. Please do that by sending a PM with contact information (address, mail and telephone number). Please don't send sensitive information. Sorry for the wait and thank you for your patience.
I haven’t read the whole thread but I think my doctors work should get some time in the spotlight. I’m a patient at the Bragee me-center in Stockholm run by dr Björn Bragee. He and his coworker dr bo bertilsson presents their work here:
It’s mostly in Swedish but I think the slides are in English.
They have worked with me-patients only for a short while but Claim to see common features eg hyper mobility, “crowded cervical junction” etc.
This looks like dangerous nonsense to me, I am afraid. Variations on this story have been going for decades and have no basis that I know of. There is a lot of overlap with somatisation talk from bps. The evidence looks as bad as the bps stuff and neck surgery is almost certainly more dangerous than GET.
This looks like surgeons selling operations to me. People with good reasons for neck surgery may benefit but fm is not a good reason and me/cfs is cetainly not.
I'm a bit worried that they've decided to use enema instead of colonoscope for the transplant. Somehow this doesn't seem to be an optimal way to deliver the bacteria to the whole colon.
You don’t think that perhaps a subset of me/cfs patients could have these problems?
I think they talk about this in the presentation:
I don't know of any evidence for people with me having neck problems more than anyone else. The doctor in the video is talking in a standard pseudoscientific way. Real medical science does not sound like that.
These myths go round and round between doctors who don't understand how to collect reliable data. There is no overlap between me and cervical myelopathy.
Petwr Rowe article is an example of the same sort of pseudoscidentific confusion. Amongst 300 million people there will be a few with both cervical myelopathy and (maybe) me. That does not mean me overlaps with myelopathy.
For me it certainly was a big problem but no way I would let them cut in it.
Article from a local newspaper in Sweden about a mother and a father who are caring for their severely ill ME sick daughter.
The article described well the severity of their situation and their desperate fight for help.
Hallandsposten: De står maktlösa inför det fängelse som ME har skapat
google translation: They stand powerless before the prison that ME has created
As a parent, to see your 18-year-old child totally isolated from the outside world is painful, but in addition comes the powerlessness before the physical pain she is forced to endure.
- Sometimes she gets a headache that is so strong that she almost looses her consciousness. She describes it as "the brain presses," says Kalle, and tells about the months when he and Lotta changed on watching their daughter all her waking time - terrified that she would suddenly have a seizure with symptoms that resembled unconsciousness.
- She got stiff in every muscle and we couldn't communicate with her.When it happened in January, I panicked and called 112 to ask what to do. They wanted to send an ambulance, and didn't understand at all when I said "no, she can't do that!", Says Lotta and continues:
- Going to the emergency room and being examined by a whole battery of people, would mean so much impression that her condition would be severely impaired for several weeks. I understand that it sounds strange to those who do not know ME - and unfortunately not everyone in the health care does.
Interview with Karin Alvtegen. She is a famous Swedish crime fiction author who suffers from ME. She's been open about her experiences and recently publis
Another interview with Karin Alvtegen.
allas: Karin Alvtegen har ME - berättar om sjukdomen
google translation: Karin Alvtegen has ME - tells about the disease
- This is a medical scandal! Although the diagnosis of ME has been in existence since 1969 according to WHO, only a few places in the country have accumulated knowledge and expertise. Severe ME patients are seen as hypochondriacs and many doctors are at best ignorant and worst case uninterested, says Karin, who must take a deep breath to calm down.
I'd just like to add that disinterest isn't actually worst case scenario, though. Similar things that happen in UK and other countries happen here in Sweden too, like for example children being removed from their families and/or forced to undergo harmful bps "treatments", adult patients being sectioned or otherwise coerced to undergo bps/psychiatric "treament" etc.
Swedish Dagens Medicin has written about the OMF research collaboration in Uppsala. The article is short and not spectacular but it is somehow spectacular that this magazine reports on it, since they have a history of ignoring biomedical research news about ME. https://www.dagensmedicin.se/artiklar/2019/04/08/satsning-pa-me-forskning-i-uppsala/
Also note it's sorted under 'neurology' - wonder if that is that new?
I think it's rather good actually, even if it's short. Mentioning an Uppsala professor working with Stanford and Harvard is the main signaling effect here, to health professionals, I think:
They have done that sometimes before, but often they have also pointed out that not all people agree on it. In this article, they have no mentioning at all of BPS, which is a step forward.
A new Aftenposten piece.
via google translate:
LOL at this: "We understand that it can be difficult to realize that thinking and behavior processing can affect such systems..."
That's pretty hilariously smug considering how badly they've misunderstood the controversy. Nina Anderson is the only name I recognised, and she has come out with similar things previously.
They say "this comment is primarily about the ME [association]'s rhetoric", but then they fail to quote any problematic rhetoric.
They say "Both in the post of April 3 and a number of other posts and writings, the ME association formulates as if we who disagree with them in causal explanation and treatment arrangements, have evil intentions, that we know that our views and recommendations will harm the patients, but still run on." It would have been useful if they could have quoted the section where the ME association did this, as I just had a quick look through the April 3 post and could see no accusations of evil intentions.
Separate names with a comma.