News from Scandinavia

Dolphin said:
That’s great. Well done to all who donated, fundraised or in some way were involved. I think I would have preferred the money wasn’t restricted to clinical trials/symptoms relief. I think it’s important to work out the biology so we have a better understanding of what is involved, what drugs might be required, what objective measures could be used to measure clinical response, etc.
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I do agree, overall, but think this is just this years focus for applications? :) It's been focus on biology earlier years, rituximab, Liens lactate study, an unpublished immune study etc have gotten money.

And I think it's good, to stimulate some research in symptoms relief now. Norwegian patients have problems with for instance access to pain and sleep clinics, as there is no evidence base for such treatments. Even getting to try out B12 and saline can be hard, for the same reason. It would have been good to know, one way or the other, if some of these things could help a bit, as any real treatment realisticly is years away. Or just to get some of the severe patients some deasent pain relife.

Also, I think it's a wise choice, for this years grants. To both generate continuing interest into donate to research, to this year focus on somehing that might be helpfull in a shorter timespan. And to keep up patients morals, as many people feel quite down over the negative rituximab result and the thought that there is no help coming for years yet.
 
Agree, @Dolphin. I believe that the symtoms mentioned will fall into place as soon as the cause is targeted. In my experience, many of us is not even able to tolerate drugs towards symptom relief of sleep and pain.
 
The Norwegian ME Association has published a report about severe ME based on a survey among 586 ME-patients and 198 carers. The report has been presented to the Norwegian Directorate of Health today.

Når nøden er størst er hjelpen nærmest borte

Not able to give a summary in English at the moment, but perhaps some other forum members can? In that case I suggest a thread is created for the report as I'm sure its contents will be of interest for the forum.
 
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Great Twitter thread (in Swedish) about giving informed consent to participate in research and allowing your medical data to be shared, why ethical approval doesn't guarantee that the risk assessment is realistic, advice on how and where to find what you need to know, lack of reporting of harms, etc.

 
The Danish ME Association is running an online survey for Danish ME patients on illness progression.

The survey consists of 14 questions, takes about 5 minutes to answer and is anonymous.

The survey is based on a similar survey from the Norwegian ME Association which received over 5 000 responds. Hopefully the Danish survey will enable a comparison of the situation for Danish and Norwegian ME patients.

Spørgeskemaundersøgelse om ME-patienter i Danmark - Sygdomsforløp
 
The Norwegian Public Broadcaster (NRK) recently had an interview on radio with the former athlete Ingunn Ullerhaug in connection with covering the recent study from Katarina Lien on blood lactate accumulation.

Now Ingunn Ullerhaug has written a debate article which is currently on the front page of NRK.

She tells how she got ill with ME and became well again after six years by monitoring her levels of lactate acid.

She used to be a professional cyclist, and often exercised over 30 hours a week. She says that during such weeks it was seldom she had lactic acid values over 4 for more than a few minutes at the time. When she got ME, she started to monitor her lactate acid levels and discovered her levels could stay over 4 for several hours in a row. Every day. After having done simple things as walking up a staircase her levels could be so high that her device couldn't even measure it, as it stops on 25.

She says that by monitoring her lactate acid levels and using her knowledge from top level athlete, she is now healthy again and works as a psychologist. (In the previous radio interview however she said she worked part time and had improved, not recovered)

She says she now meets ME patients through her work and that the stories she hears are frightening about the incompetence of ME among health care workers.

Ingunn Ullerhaug - Fra Tour de France til ME
google translation: From Tour de France to ME

Imagine participating in the Tour de France. You ride about four hours a day, which is 28 hours a week. For most of this time, you cannot have lactic acid values above four, otherwise you will not be able to continue. When sprinting or when moving in the mountains, you cross the border, but rarely for more than one hour per day. That amounts to a maximum of seven hours per week.

By comparison, as an ME patient, I could have a lactic acid measurement over four for more than 70 hours per week. In other words, I was over the pain limits ten times as long as a cyclist in the Tour de France. Believe me, that's also how it felt.
 
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I just read the following in the ME Global Chronicle:
Reports about the (very) severely affected ME-patients in Norway will be presented by the Norwegian ME Association, an organisation with around 5000 personal members with headquarters in Oslo and sub-associations in all Norwegian regions.
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Is that correct? Is there an annual membership fee, and if so what is it?
That association seems like it might be by far the best I am aware of in terms of its membership based on the population. Any idea how many are in other countries? I imagine the figures mightn't be huge, given the information is in Norwegian.

Background: the population of Norway is just 5.28 million.
 
Dolphin said:
I just read the following in the ME Global Chronicle:

Is that correct? Is there an annual membership fee, and if so what is it?
That association seems like it might be by far the best I am aware of in terms of its membership based on the population. Any idea how many are in other countries? I imagine the figures mightn't be huge, given the information is in Norwegian.

Background: the population of Norway is just 5.28 million.
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Correct.

Membership is around $40/year, and the government matches that with around $55 per member if I remember correctly.
 
Trish said:
500,000?
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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.
 
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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One can't necessarily assume a big turnover means a lot of money for research. Action for ME stopped having a research fund in the early 2000s when its income was around 1 million UK pounds* per year. It has restarted but it is still relatively small compared to its turnover; though some is better than none.

A lot of national patient organisations seem not to have research funds at all.

*Around US$1.25 million
 
Dolphin said:
So am I reading this correctly that there is an agreement that the government contributes based on the membership figure?
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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:

In the government budget for 2019, the Government proposes to increase the appropriation for this scheme by almost NOK 135 million. After this, NGOs will be allocated well over NOK 1.5 billion in support from the scheme in 2019.
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https://translate.google.com/transl...el-3-Andre-saker-/8-Frivillighetspolitikken-/
 
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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I don't think I remember coming across it in any English-speaking countries.
 
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