News from Scandinavia

It does make me wonder whether such a group actually has 5000 patients as members if its membership is 5000. Parents, partners, siblings and some others might join if they knew it would lead to such government money. A patient could even pay the membership of such individuals rather than give a donation, knowing that it would result in more government money than if they simply gave a donation.
 
Michiel Tack said:
Yes, sorry. Wow, that's a good model.

I always thought it was best to keep membership cheap to attract enough followers and then try to collect money by fundraising and reaching out to healthy people (ME/CFS patients usually don't have a lot of money). But if those numbers are correct, then this seems like a pretty amazing model to collect revenues to invest in research. Even if the government doesn't help out, that's still 40 x 5000 or 200.000 dollars a year.
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I'm not absolutly sure about this - but I don't think that money can be spent on research. It's ment to help with general administration and activities for members, at least that's my understanding.

The ME association have a seperate enity that do fundraising for research.
 
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Dolphin said:
It does make me wonder whether such a group actually has 5000 patients as members if its membership is 5000. Parents, partners, siblings and some others might join if they knew it would lead to such government money. A patient could even pay the membership of such individuals rather than give a donation, knowing that it would result in more government money than if they simply gave a donation.
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Note - I'm not sure the number for government funds is correct.

And yes, the ME association is open for family members and others supporting the cause, but they will have to be registered as such. Not sure if the government support is differentiatet for types of members. But they will know how many of that membership are patients themselfs.

About membership as donation - I'm not sure most people think about it that way? Some might, but people care about membership beeing benefitial to themselfs. I guess many just assume organisations will get some support in general, not knowing how it's calculated.
 
Dolphin said:
It does make me wonder whether such a group actually has 5000 patients as members if its membership is 5000. Parents, partners, siblings and some others might join if they knew it would lead to such government money. A patient could even pay the membership of such individuals rather than give a donation, knowing that it would result in more government money than if they simply gave a donation.
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Big parts of my family have signed up for this reason. Firstly, bigger numbers mean more power, but it’s also a very effective way to contribute since your money is more than doubled. Especially since you only pay full price for the first member in any given household. We only pay $10 extra for Mr Pants’ membership.
 
inox said:
Yes, this is the same for (almost) all voluntary/nonprofit organisations. There is also possible to apply for extra funds based on the organisations activity level - at least organisations aimed at children/youth (not familiar with for adults). Activities in the form of a course/classes. Different departments also have funds for spesific causes one can apply for.

Is this uncommon? It's just such an everyday thing, I've never thought to ask how it's done other places. If interested, there is a general description of the politics in the link, a commentary to the national budget:


https://translate.google.com/translate?sxsrf=ACYBGNRO9-P6RqDxHNaHONAPtRVvY5fFmQ:1562621545351&um=1&ie=UTF-8&hl=no&client=tw-ob&sl=auto&tl=en&u=https://www.statsbudsjettet.no/Statsbudsjettet-2019/Dokumenter1/Fagdepartementenes-proposisjoner/Kulturdepartementet-KD/Prop-1-S-/Del-3-Andre-saker-/8-Frivillighetspolitikken-/
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Oh no, it's that evil Norwegian SOCIALISM!
 
The Danish local newspaper Ugeavisen Esbjerg has written many articles about ME. They've followed for a long time a story about the young and severely ill ME patient Marie Louise and her family's fight against the system.

She was initially refused any kind of help, but today the newspaper writes that finally she has received sick benefits. Not without another battle though, as the local job centre had INSISTED on a meeting with her. Three persons had come to their house and her room. The meeting only lasted for five minutes, but that was enough for her to now having deteriorated even further. She was able to brush her teeth and turn herself in bed, now her parents says she is really struggling and describe her as being in the middle of an avalanche.

The newspaper has an opinion piece (p. 2) on the general situation for severe ME patients in Denmark and points to the recent report from the Norwegian ME patients on severe ME. It says the report should be mandatory reading for all politicians and doctors. They have an interview with the Danish ME Association who say's the handling of Marie Louise's case has been irresponsible (p. 2), interview with the parents who says the victory of receiving sick benefits came with a very large price for their daughter (p. 4), Marie Louise's GP who is shocked over the job centre who ignored his warnings, and the job centre who says they were just following the rules (p. 4) and a summary (p. 6)

https://ugeavisenesbjerg.e-pages.pub/titles/ugeavisenesbjerg/7987/publications/417/pages/2
 
Great to hear that another country has been raising money privately for research:

RME Sweden Donation to Support Research in Sweden

Thank you to our friends at RME Sweden (Riksförbundet för ME-patienter) for your latest donation to support research at Uppsala University. Since joining forces, RME Sweden has donated over $140,000 USD (1,326,444 SEK) to OMF. An ardent supporter of OMF, RME Sweden shared that all restricted for research donations that they receive are donated to OMF "to secure scientific quality and to guarantee the independence of the researchers."
Kerstin Heiling, RME Sweden Chair and International Coordinator said, "We are very grateful to OMF, not only for helping us with scientific supervision, but also for support far beyond the contributions that we can make." Thank you to our partners in Sweden for your continuing support to advance this urgent research.
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Michiel Tack said:
I notice that the article doesn't mention CFS and only speaks of ME. Is that common in Scandinavian countries?

Here in Belgium, it's all CFS and ME is still taboo.
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Yes, I guess it is. The (biopsychosocial) national competence center uses CFS/ME, and some researchers, but in media it's mostly only ME. Perhaps simply because it's easiest. Patients use ME rather consistently so perhaps also that has been paying of. Some doctors protest though as the name points to a disease process they say hasn't been strictly proven yet. But anything is better than CFS. Hope Belgium will move away from it too.
 
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And, kronisk utmattelsessyndrom (aka chronic fatigue syndrome) is quite a mouthful. No one has ever used KUS, and CFS doesn’t correspond directly so it all gets very confusing unless you’re already familiar with the different terms.

So yes, ME is a lot easier.
 
andypants said:
And, kronisk utmattelsessyndrom (aka chronic fatigue syndrome) is quite a mouthful. No one has ever used KUS [...]
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"Kroniskt trötthetssyndrom" in Swedish, but only the BPS people refer to it as "KTS", and a few of them sometimes use "CFS" or "CFS/ME".

"Trötthet" in Swedish means "tiredness", so it's even worse than "fatigue"...

"Utmattningssyndrom" or UMS, burnout, (literally 'exhaustion syndrome') is a separate diagnosis in Sweden, officially accepted by Socialstyrelsen since 2005 (ICD-10-SE F438), with separate guidelines for diagnosis, treatment, rehabilitation, sick leave/social insurance etc. It's different to ME in that the prolonged physical and mental tiredness/exhaustion is caused by prolonged psychosocial stress, usually at work and/or at home. It falls under mental health.

ME/CFS is the most commonly used name nowadays in Sweden, I believe? Used by many pwME as well, in part because that's the name the patient organisation is insisting on. But many pwME still prefer ME.
 
About the evidence behind prognosis for children/adolescents stated in the Norwegian guidelines for ME/CFS

A patient have asked the Norwegian Directorate of Health why it's stated in the national guidelines for ME/CFS that the prognosis is better for young patients than adults, and referring to a study showing that 54-94% of children and adolescents recover. The patient had gotten declined disability benefits based on this positive prognosis for young/adolescents with ME.

From the patient's email to the Directorate of Health (translated to English by me):
The study you are referring to is neither valid or representative. It's 19 years old and contains only 32 research objects. In addition they received an ME diagnosis based on the Oxford criteria. The Oxford criteria have a higher prevalence than the Canadian criteria, so much that for each 15 who fulfils the Oxford criteria, only 1 person will fulfil the stricter Canadian criteria. In others words this study had likely only 2-3 patients with ME"
The patient further asks for this information to be updated.

This May the Directorate of Health turned to the National Competence Service for CFS/ME for advice.

The Competence Service responded (translated to English by me):
It's true that the few studies referred to in the national guideline are old and of low quality.
There are no studies who has followed up adolescents for more than 2-3 years. What we have as basis regarding prognosis, is among other the FITNET study from the Netherlands where they followed up adolescents for approximately 2,7 years. The study is done on adolescents who got the diagnosis based on Fukuda criteria. By the time for the follow up, slightly less than 60% had recovered. The study also shows that the longer the adolescent is sick, the poorer the prognosis is.
Otherwise our own clinical experience show that most recover, but this can in no way be quantified.

Attached file is the original e-mails between the Directorate of Health and the National Competence Service
 

Attachments

Kalliope said:
Otherwise our own clinical experience show that most recover, but this can in no way be quantified.
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Hahaha, what? "Oh yes, we believe that most recover but we can't possibly prove it as we have no records that would do so. Competent? Yes we believe we are, it's in our name after all, but we can't prove that either." :D

I know it's a translation but did they actually use the word "quantified"? If they did then they are saying that recovery can't be measured at all.
 
Kalliope said:
I think it is the correct word. The original word is "tallfeste" (to put a number on). This is how the dictionary translates it https://www.dinordbok.no/norsk-engelsk/?q=tallfeste Perhaps "measure" would have been more accurate to use?
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Thanks for the explanation.

I could very easily put a number on (or measure) what recovery would mean for me, i.e. number of hours worked without symptoms, number of mins exercised without symptoms, distance walked without symptoms etc etc. Again, I question how competent they actually are.
 
Andy said:
Thanks for the explanation.

I could very easily put a number on (or measure) what recovery would mean for me, i.e. number of hours worked without symptoms, number of mins exercised without symptoms, distance walked without symptoms etc etc. Again, I question how competent they actually are.
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I read their answer that even though their clinical experience tell them many of their patients recover, they have no way to put a number or percentage on exactly how many we're talking about.

ETA: But how recovery is defined by them is also a valid question.
BTW; They are nicknamed the Incompetence Service. :p
 
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