News from Scandinavia

It was a good read.

I'm always very pleased when someone is just completely honest.

 

She needs to join S4ME. I think I thought much as she did before I joined the forums.

 

Do you mean that you used to think CFS was a wastebin diagnosis for things that doctors overlooked or can't explain, but that interaction on the forum conviced you that there may actually be a distinct pathological mechanism behind ME/CFS? Or am I misinterpreting things?

 

More or less. To be honest, during my time as a rheumatologist up to 2010 nobody much talked about CFS. Chronic pain yes but not CFS. Nor did physicians talk seriously of ME much but I was aware of the popular idea of ME. I was doubtful that there was such a thing. I am now convinced there is such a thing but it is maybe not quite what the popular view seemed to have been then. It isn't an encephalitis in the way Acheson suggested. It is a physiological disorder rather than a known pathological entity, if that makes sense.

 

Could you clarify that a bit more for me please.

 

Essentially I am saying that ME is like diabetes or hypertension, or perhaps Parkinsonism which are defined as specific patterns of disordered physiology. In contrast to type I diabetes, which is defined in terms of diabetes due to damage to islet cells, renovascular hypertension, which is defined as due to renal arterial narrowing and idiopathic Parkinson's disease, defined as associated with pathology in substantia nigra.

 

What about those of us who did initially have neurological deficits suggestive of neuropathy? (in my case, acute flaccid myelitis with a Polio-like gait)

 

That is not ME. It may have been part of an initial acute illness that triggered ME - as seems to have been the case in the Royal Free episode. In the same way the splenomegaly of infectious mononucleosis is not part of ME, even if ME followed.

 

A feature over 9 pages about ME in the local Norwegian newspaper Stavanger Aftenblad. It's paywalled, so can't offer google translation, but here's a summary:

The article tells the story of Rebecka, who got diagnosed with ME when she was 5. She is now 8. Her parents says it can be difficult for an outsider to understand, as she on a good day can run around like other children. What no-one sees, is how many hours she spends on the sofa. The parents have been careful to not let her spend so much energy that she gets completely empty.

Today they are glad they didn't follow the advice they received before Rebecka was diagnosed. Many, including health care personell, thought they should push her. It wasn't until they met the paediatrician Vestergaard at Stavanger university hospital it was confirmed they did the right thing. Vestergaard said if they had pushed her, they might have risked Rebecka developing a more serious degree of ME.

The Norwegian ME Association - Rogaland County - confirms that even small children can get ME. This local branch of the ME Association has worked on a project for adapted education for pupils with ME, and is about to launch it nationwide. - There is an enormous need out there for knowledge and help, and people can be in incredibly tough situations.

Vestergaard says that the assessment of diagnosing ME is wide ranging. The GP does the initial assessment of ruling out other obvious psychological or physiological illnesses. Then the child is referred to the hospital, but first the child has an "ME interview" with a nurse. If this interview confirms a suspicion of ME, the child is admitted to the hospital for 3-4 days. The process is so complex and takes so much resources that they only accept one patient a week. Of 910 patients between 5 and 18 years from 2009-2017, 118 were diagnosed with ME.

Fatigue in itself is not sufficient to get the diagnosis. The fatigue in ME is particular, and the patient must have the same symptoms at home, in school and when he/she is among friends. The symptoms don't improve by rest and must last for an unusually long time. The symptoms should be new and been present for at least three months. In addition the disease bring pain, problems with sleep, and cognitive or neurological symptoms.

During the assessment, overachievers are filtered out. - These patients don't have the same reaction on physical strain. These youths will become free from symptoms if they can manage to reduce the pace and have lower demands, says Vestergaard.

When a child is diagnosed with ME, it's important for the hospital that the people around the child receives information about ME. The hospital calls in a meeting with primary health service, school, school nurse, educational and psychological counselling service and the parents.

The GPs are very important to be in dialogue with. We want to offer advice on how they can follow up the child. CFS can often lead to additional conditions as depression, weight gain/weight loss and anxiety.

ME is a disease that can turn the life of a family upside down. It's often resourceful, active children who goes from functioning on top to functioning on the bottom. It's very hard for the patients and their families.

Vestergaard says that many parents are good at taking measures while waiting for assessment from the hospital.
- When they see that the child gradually can do less and less, many of them choose to lower the tempo and demands to the child in all ways. They use common sense, instead of pushing the child, which would have been completely wrong in these situations.

As there are several coinciding factors needed for the illness to start, and CFS/ME is a complex disease, Vestergaard doubts that there will be a simple cure for the illness. Today doctors can't do much else than alleviate symptoms. That means to make sure the children keeps normal hours, eat and drink sufficiently, and make sure the pain doesn't get unbearable as well as ease symptoms like nauseousness and stiff joints.

Vestergaard has worked with this patient group since 2009. During these years she has seen that several have improved a lot and over time can do more of the things they want.
- I doubt any gets 100% well. I think it's more about them adjusting to the illness.

ME is a controversial diagnosis, according to Vestergaard. The scepticism and questions from doctors and others are many. Therefore she keeps a low profile in social life on what she's working with.

 

Yes, quite a good read in Politikken. I believe patients are aware of the great challenge, doctors uncertainty and feeling of powerless and all that stuff. But we could surely need more humility when it comes to the body’s/organisms complexity, and a lot less of plain rejecting and/or denial.

What is a little troubling, is the big focus on “fatigue” and then the strong belief that it is only an exclusion diagnosis. That’s how it seen and treated today, but isn’t that approach a little passive clinically/practical?
Instead of the focus on fatigue and the rejection of what she calls CFS, doctors should obviously be familiar with criteria and cardinal symptoms. That is at least a far better start than simply “exclusion”, that’s it.

Point is if you have knowledge of ME (not chronic fatigue) you could diagnose and take some important actions, at least initially, based on clinical symptoms. That may be in an ideal world, but important point is that valuable time may be wasted with consequences of just waiting X months.

It’s ok that the doctor lists all these other things and exemplifies an exclusion-process, but the failure is the overall focus on the fatigue-part, the chronic fatigue. Then you kind of missed the point if you believe ME is that.

 

Nina E. Steinkopf, ME patient, blogger and the initiator behind a petition against the national competence service for CFS/ME and their psychosocial approach (with over 7 000 signatures) has written a good response.

Oppfatninger, ytringsfrihet - og et godt klima for ME-forskning
google translation: Perceptions, freedom of speech - and a good climate for ME research

Science and medicine should be based on solid documentation and verifiable results. Why should treatment of ME patients be excluded from this principle? Until the cause of the disease is clarified, potentially harmful treatment should be avoided. First: Do no harm!

 

Yet another response from another ME patient

Fastlåste tankemønstre
google translation: Thought patterns that are stuck

The best advice I can give is to investigate for yourself. Independent scientists who take the time to go in and investigate find that the patients and researchers who criticize PACE are right. Among them, we find Hilda Bastian , one of Cochrane's founders.

 

The article is paywalled, so haven't read it, but from the headline the article is about psychiatrist Per Fink needing to travel under false name because activists hate him so much. Apparently it had happened when he went to New York. Don't know if he still does it.

Berlingske Tidende: Aktivister hader professor Per Finks behandling. Derfor rejser han under falsk navn
(Activists hate professor Per Fink's treatment. Therefore he travels under false name.

 

That makes no sense. There is literally no point in following him around and if he has a planned event then that's where people would protest, not at him, but rather at whoever invited him for being irresponsible. The sense of self-importance these jerks have borders on megalomania. They take legitimate criticism of their shoddy work as personal attacks on their ego.

 

when have anything they do ever been about sense

 

Shows how much he knows about ME. In the unlikely event that he's ever approached / followed by an ME sufferer, all he has to do is walk at a brisk pace for a few minutes and he'll leave them behind him collapsed on the floor.

 

Excellent feature on ME on Swedish TV this morning, on the show Malou efter Tio. Interviews with Karin Alvtegen -- pwME and arguably one of Scandinavia's most widely read award-winning authors -- and her doctor Anna Lindquist (Stora Sköndal ME/CFS-mottagning).

Available to watch online for 30 days from today, but geoblocked outside of Sweden.
https://www.tv4play.se/program/malou-efter-tio/11976335

Tomorrow is the release day for Alvtegen's new book "Osynligt sjuk" (Invisibly ill), written by award-winning journalist/author Karin Thunberg, with contributions by dr David Tuller, prof Jonas Bergquist and others. It's non-fiction, about Alvtegen and what life with ME is like for her, as well as facts about ME, interviews with her family members etc.

I'm looking forward to reading the book.

 

This was good and informative. I am sorry that Karin Alvtegen has deteriorated so much that she wasn't able to join in studio.

The doctor, Anna Lindquist talked about the importance of separating ME from general fatigue and that patients must not push themselves. Emphasising that this is a serious disease.

I think the programme is only available for Swedish viewers from TV4 Play's website, but it's on YouTube as well.

https://www.youtube.com/watch?v=-kb2ifCnSWw

 

A letter to the editor from head of department at the children and adolescent's ward at Akershus university hospital. I believe he is prof. Wyller's boss?

He says they've had a productive research environment for CFS led by prof. Wyller, but that the funding to this work has been reduced lately. He blames ME patients for this.

He refers to the Reuter's article and the criticism towards the PACE trial to show how much harassment there is from patients. He also refers to the petition against the National competence service and the research council's allocation to user involved ME research to show how much power the patients have gotten. Prof. Wyller's research project on children and Lightning Process didn't receive funding from the research council's allocation. The funding for Norway's most published ME research milieu is decreasing. Instead research milieus working from a specific theory that ME has physiological causes have received substantial amounts.

Erik Borge Skei - Pasientgrupper sjikanerer ME-forskere og utøver press for å påvirke hvem som får forskningsmidler
google translation: Patient groups harass ME researchers and exert pressure to influence who gets research funding

 

Well, democracy IS about power to the people. Idiot. So IF pwME had this degree of power, that would be the right thing in a democracy.