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Help me compile a list of research-funding ME/CFS charities in each country

Sasha

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Not really. I haven't heard of any involved in funding. But reading large amounts of Dutch makes my brain crash, so I've not been on the Dutch forums much.

Do you know if there are any Dutch-speakers on the forums I could tag?
 

Sasha

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@Sasha In the Netherlands I found this one: http://www.me-cvs-stichting.nl/main.php?id=61 (similar to Wake Up Call they use their money towards research, awareness, etc. It doesn't specify if it's biomedical research though... Elsewhere on the website I read sth that makes me think they aren't necessarily against the psycho view on ME/CFS... hmm Sounds fishy right?)

@lansbergen - just tagging you, as a native Dutch speaker, to ask if you know what kind of research this group are likely to support and whether it's going to be biomedical?
 

Effi

Senior Member
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@Sasha btw I'm a native Dutch speaker myself :) On the website I read that they think the cause of the illness may be psychological, biomedical or something else. Maybe @lansbergen might have some inside info or personal experience with this organistion?
 

Sasha

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UK
@Sasha btw I'm a native Dutch speaker myself :) On the website I read that they think the cause of the illness may be psychological, biomedical or something else. Maybe @lansbergen might have some inside info or personal experience with this organistion?

Oh! Sorry, Effi, I had assumed you were Belgian! And I misread what you said and thought you weren't sure about what they were saying (whereas they're the ones who aren't sure what they're saying!).

Sorry, @lansbergen! I've got all the info I need. My mistake!
 

Sasha

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UK
@Sasha btw I'm a native Dutch speaker myself :) On the website I read that they think the cause of the illness may be psychological, biomedical or something else. Maybe @lansbergen might have some inside info or personal experience with this organistion?

Actually, Effi, can you give me a link to the page that that text is on and cut and paste that sentence here, where they make that statement?
 

Effi

Senior Member
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Oh! Sorry, Effi, I had assumed you were Belgian!
the majority language in Belgium is Dutch (the Flemish variant) :) followed by French (it's almost half-half, with a slight majority of Dutch speakers. And then there's a minority of German speakers. This country has three official languages, so it's a bit complicated to know who speaks what here.
 

Effi

Senior Member
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Europe
Actually, Effi, can you give me a link to the page that that text is on and cut and paste that sentence here, where they make that statement?
http://www.me-cvs-stichting.nl/ under 'oorzaak me/cvs':
Wereldwijd zijn wetenschappers vanuit verschillende studierichtingen op zoek naar de oorzaak of meerdere oorzaken van ME/CVS. Medici zoeken naar virussen, psychiaters naar trauma's en psychologen naar (foutieve) cognities (gedachten) die tot het ontstaan van ME/CVS kunnen leiden. Daarnaast zijn er deskundigen die er van uitgaan dat de oorzaak van ME/CVS een complex geheel is van meerdere factoren. Er is geen enkel onderzoek dat overduidelijk de oorzaak aantoont.

Basically what they're saying is that there's different view points. To my understanding the above quote shows that they haven't abandoned the psych view at all. ("psychiatrists look for trauma, psychologists look for faulty cognitive thoughts that could have lead to becoming ill with me/cfs.")

Meer onderzoek en samenwerking tussen onderzoekers en behandelaars is nodig!
De ME/CVS-Stichting Nederland stimuleert onderzoek naar de oorzaak en behandeling. Met uw steun kunnen we meer. Word lid/donateur!

All they say here is 'more research and cooperation between researchers and medical practitioners is needed! We stimulate research into cause and treatment. We can do more with your support. Become a member!'

Honnestly I wouldn't trust them with my donation... :vomit:
 

Sasha

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http://www.me-cvs-stichting.nl/ under 'oorzaak me/cvs':


Basically what they're saying is that there's different view points. To my understanding the above quote shows that they haven't abandoned the psych view at all. ("psychiatrists look for trauma, psychologists look for faulty cognitive thoughts that could have lead to becoming ill with me/cfs.")



All they say here is 'more research and cooperation between researchers and medical practitioners is needed! We stimulate research into cause and treatment. We can do more with your support. Become a member!'

Honnestly I wouldn't trust them with my donation... :vomit:

Actually, if all they're saying is that they 'stimulate' research rather than 'funding' research they'd be outside the remit of my list. Are they clear anywhere that they're actually funding research rather than campaigning for it?
 

Effi

Senior Member
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Actually, if all they're saying is that they 'stimulate' research rather than 'funding' research they'd be outside the remit of my list. Are they clear anywhere that they're actually funding research rather than campaigning for it?
I dug a little deeper into the website and got to the financial details and the annual reports. It seems like this year and last year they haven't been very active. The only thing (info from 2013) I could find was general stuff about 'stimulating research into illness cause and evaluation of diagnostic criteria, treatment and support':
Stimulering van wetenschappelijk onderzoek, in het bijzonder op meer onderzoek naar oorzaken en op de evaluatie van richtlijnen voor diagnose, behandeling en begeleiding van ME/CVS.

Nowhere did I see any specifics about a focus on biomedical research (which was very clearly emphasised on the other websites I checked from other countries). And then I found THIS, under 'possible treatment': "Treatment of me/cfs mainly consists of symptom relief. Which treatment works differs from patient to patient. Here you can find some of the most common treatments in the Netherlands." Warning: bombshell :ninja:

I'd say ditch 'em! :cool:
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I dug a little deeper into the website and got to the financial details and the annual reports. It seems like this year and last year they haven't been very active. The only thing (info from 2013) I could find was general stuff about 'stimulating research into illness cause and evaluation of diagnostic criteria, treatment and support':


Nowhere did I see any specifics about a focus on biomedical research (which was very clearly emphasised on the other websites I checked from other countries). And then I found THIS, under 'possible treatment': "Treatment of me/cfs mainly consists of symptom relief. Which treatment works differs from patient to patient. Here you can find some of the most common treatments in the Netherlands." Warning: bombshell :ninja:


I'd say ditch 'em! :cool:

Well, I'm aiming to provide an info resource for patients so I don't think it's for me to ditch 'em if they're eligible for my list - but my list is for charities that are doing or funding biomedical research. I'll be adding a warning that people should check that any charity is not doing psych research as well (and could add it to this entry in particular if it was on the list) but 'stimulating' research isn't the same as 'funding' research and so I don't think they should go on the list at all.
 

Effi

Senior Member
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Location
Europe
so I don't think it's for me to ditch 'em if they're eligible for my list
I might've been a bit harsh (*sorry*) but this BPS perpetuation really gets on my last nerve!:thumbdown: From what I've gathered they mainly use their financial donations towards patient information and advocating, which obviously is very valuable and necessary.
 

Sasha

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Messages
17,863
Location
UK
I might've been a bit harsh (*sorry*) but this BPS perpetuation really gets on my last nerve!:thumbdown: From what I've gathered they mainly use their financial donations towards patient information and advocating, which obviously is very valuable and necessary.

Same here with the BPS nonsense, but if I'm providing an info source I need to be consistent and transparent. But they don't sound as though they're funding research at all so they're out anyway!
 

Sasha

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Messages
17,863
Location
UK
@deleder2k - is it still possible to donate to the research at Haukeland? If so, how? Is there a web page (or is MEandYou still fundraising for Haukeland)?