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Catastrophic news: Swedish ME/FM biomedical clinic Gottfries to be replaced with BPS for MUS

worldbackwards

Senior Member
Messages
2,051
The message seems to be: these patients are non compos mentis and should be treated accordingly. I wouldn't be surprised if some of these infringe patients' basic rights - points one and four particularly. I'd be contacting the ME charities in your country and seeking to clarify the legal position of all this.
Well, quite. Surely this goes against all principles of informed consent. I'm astonished that they can get away with this on a widespread basis.
 
Messages
84
a bit more about the TERM-model. here are a few "interesting" quote from the guidelines (again, sloppily translated -- i actually don't speak danish, but written danish is quite similar to swedish so i can understand most of it reasonably well):



HOW SURE CAN I BE THAT IT'S A FUNCTIONAL DISORDER?
In 75% of the cases where the patients are suffering from more than 6 physical symptoms for women and at least 4 physical symptoms for men, the condition will lack a biomedical explanation.



Consider if new symptoms or a worsening are expressions of emotional communication rather than a new ailment.



HOW BIG IS THE RISK OF DELAYING A DIAGNOSIS OF ANOTHER SERIOUS ILLNESS?
[...] Several studies about persistent physical symptoms suggest that the diagnosis of an organic illness is only delayed in less than 4% of the cases.

I have to stop reading this stuff before I go to bed, it just makes me absolutely furious, and makes it even harder to fall asleep than it already is!

I don't understand why the case of Karina Hansen hasn't received more attention in Denmark either. The only site actually reporting about the case is Ekstrabladet, which is probably the Danish equivalent of The Sun. Sadly to me, it seems that the people campaigning for her in Denmark are primarily older CFS / ME sufferers who are not very savvy when it comes to campaigning and of course like the rest of us simply don't have the energy to campaign properly. I really don't mean to offend anyone, but it's the truth.

I really hope I can get over this crash in time to make some sort of difference because this ''Funktionelle lidelse'' crap, is everything that is wrong with suffering from Chronic Fatigue Syndrome. Sadly, my health has taken a turn for the worse the past year, and I don't think I will be able to recover in time to make a difference.
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
*
...
* Try to make sure you’re the patient’s only doctor
* Try to create an alliance with the patient’s family and relatives
* Keep a stoic attitude towards complaints about side-effects from medications
...

These are the actions of a sociopath on its prey:
- isolate
- divide and conquer
- do it without empathy
 

JenB

Senior Member
Messages
269
Thank you so much @mango for reporting this. We're writing up a short blog post for #MEAction.

We'd also love to start a global solidarity petition in association with this news that might help spread the word among the international ME/CFS community and perhaps put a bit of pressure on officials in Sweden.

Does anyone know would be the best person or organization in Sweden to reach out to to coordinate that?

Thanks!

Jen
 
Messages
84
Oh my god. It gets even better. Apparently Peter Fink (the leader of the institute) has made up his own disease!

Apparently the newest scientific research indicates that there is something called ''Bodily distress symptom'' (BDS), and that all of the following disease all are subgroups to the same illness:

Fibromyalgia
Chronic fatigue syndrome
Irritable Bowel Syndrome
Complex regional pain syndrome
Somatization
Multiple chemical sensitivity
Chronic whiplash

So, chronic whiplash and CFS is essentially the same illness, and should be treated in the same manner?

Honestly, only in Denmark could this country bumpkin idiotic pseudoscience take place!
 

worldbackwards

Senior Member
Messages
2,051
Oh my god. It gets even better. Apparently Peter Fink (the leader of the institute) has made up his own disease!

Apparently the newest scientific research indicates that there is something called ''Bodily distress symptom'' (BDS), and that all of the following disease all are subgroups to the same illness:

Fibromyalgia
Chronic fatigue syndrome
Irritable Bowel Syndrome
Complex regional pain syndrome
Somatization
Multiple chemical sensitivity
Chronic whiplash

So, chronic whiplash and CFS is essentially the same illness, and should be treated in the same manner?

Honestly, only in Denmark could this country bumpkin idiotic pseudoscience take place!
Au contraire, that's pretty standard. What we'd call Functional Somatic Syndrome. And as followers of Sir Simon know, there is only one Functional Somatic Syndrome, whether you get stomach ache after pizza or spend the rest of your life in a darkened room.
 

mango

Senior Member
Messages
905
OMG, guys i'm so sorry! i just realised that perhaps i haven't been totally clear... this decision that was made is not about a new direction on a national level (fortunately!). it's only for the region where the gottfries clinic is situated.

so, although this change will definitely affect people from all over the country (gottfries accepts referrals from the whole country), the new direction will only be for the new clinic/service that will replace the gottfries clinic.

this decision does not affect the other clinics, stora sköndal or gotahälsan.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
[...] Several studies about persistent physical symptoms suggest that the diagnosis of an organic illness is only delayed in less than 4% of the cases.

If its the one I recall, then let me clarify: within a year, during which there are often no tests. How about long term with full testing?

How about all the organic diseases we cannot yet diagnose, including the myriad projected genetic disorders? Those genetic disorders are individually rare, but collectively its thought to be huge.
 
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Kati

Patient in training
Messages
5,497
I am so sorry it is the new directions that these clinics are taking. Especially disappointing when Dr Peterson visited a couple years back and had a talk to the drs there and politicians.

The message is not going through.
 

Asa

Senior Member
Messages
179
so, although this change will definitely affect people from all over the country (gottfries accepts referrals from the whole country), the new direction will only be for the new clinic/service that will replace the gottfries clinic.

The following could have since changed, but people who do not live--

(1) in the län (county/political region) where Gottfries Clinic is located (Västra Götaland, VG) or

(2) one particular neighboring county (Halland?) which has some agreement (I assume) with Gottfries Clinic

--the people who don't live in these counties (VG and Halland) can't go to Gottfries Clinic unless the county where they live provides a referral and *pays* for the person to travel to Gottfries Clinic.

On paper, counties that can't meet a patient's needs are required to send that patient to a county where their needs can be met. But as this costs money, it doesn't happen. The officials just lie and say everyone has the care they need. No probems...

Also, people who live in VG (and Halland) can write a self-referral, if their GP won't refer them to Gottfries Clinic. To my understanding though, if you have to travel for care even within your own county, you're supposed to be reimbursed for travel expences. But if your GP refuses to write a referral and you do a self-rerral, then you aren't reimbursed for travel expenses.

I think GP's in Sweden in general hate/loathe Gottfries Clinic and its patients. Lots of GPs literally seeth... their hate and bigotry is palpable... It's like there is no thinking in regard to this pateint group, only reactive hate/loathing/etc. It's really sick...
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
*


These are the actions of a sociopath on its prey:
- isolate
- divide and conquer
- do it without empathy
It really is time for a study on why some people go into the psychiatric profession attracted by the opportunities for feeding their own sick ego by controlling and abusing vulnerable patients, and how it can be prevented in future. Medical kidnapping has become a serious issue that is discussed in the USA so such issues can be brought the to attention of the general public and discussed seriously. There is something seriously wrong with a system that has no safeguards against sociopaths getting to write the rules on how their chosen victims are to be abused.
 

Chrisb

Senior Member
Messages
1,051
It really is time for a study on why some people go into the psychiatric profession attracted by the opportunities for feeding their own sick ego by controlling and abusing vulnerable patients, and how it can be prevented in future. Medical kidnapping has become a serious issue that is discussed in the USA so such issues can be brought the to attention of the general public and discussed seriously. There is something seriously wrong with a system that has no safeguards against sociopaths getting to write the rules on how their chosen victims are to be abused.

This is why I call them the B Psycho Socialists.
 

Asa

Senior Member
Messages
179
As afterthoughts to post 51:

If the newly-opened ME clinic in Stockholm accepts patients from all over Sweden, then it may have been "important" for Västra Götaland politicians to quickly "justify" why they will not spend money to send patients across the country from Västra Götaland to Stockholm -- and why they will not spend money for a proper (i.e. not chastized/bullied and starved for funding) biomedical clinic in Västra Götaland.

The bio-PSYCHO-social model "solves" the "problem" using the least number of healthcare staff, who also happen to have the lowest levels of education, expertise, and pay.

The so-called pain clinics in Västra Götaland have stated that they have no education or expertise in ME. Now the politicans have waved their magic wands, and everyone has "healthcare"! You have "a right" to CBT/GET!

Though it's been some time since I looked, it seems that Per Fink had a number of followers from Sweden and Norway on his Researchgate page. It might be worth following the work of these individuals in order to be aware of mis/disinformation that they might be spreading and/or using to influence policy in Sweden.

Nightmare dystopia...


EDIT: For what it's worth, I believe the good (i.e. biomedical) doctors/researchers at Gottfries Clinic are psychiatrists.

I think it's also important to know if IVO has investigated any patient complaints regarding CBT/GET and/or patient abuse in connection to the biopsychosocial model. Why would IVO push through these doctors' agenda for BPS but ignore patient complaints against BPS?

I believe too a while back that I saw that one of the hospital/university's in Stockholm (Karolinksa?) has an ethics department with a webpage talking about the importance of patients' experiences and input regarding the healthcare offered to them. BPS adherents obviously aren't interested in medical ethics though, and politicians choose what's cheap...
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The bio-PSYCHO-social model "solves" the "problem" using the least number of healthcare staff, who also happen to have the lowest levels of education, expertise, and pay.
I would put it this way. The BPS approach is to appear to solve the problem, either in patients or society. If everyone thinks you solved it then why does it matter if nothing has changed? Its just a more sophisticated spin or hype machine. The cost factor is one of their selling features, but a big part is how much they promise. So long as governments are convinced they deliver then they will get support. Three government studies showing it is a failure, and the probable genocide in the UK do not seem to matter much. I have to ask: why?
 

Snowdrop

Rebel without a biscuit
Messages
2,933
This and related issues should be legal challenges against the system. Citizens of a country should expect protection from harm from their gov't. Even when the gov't seems to sanction the abuse there are still avenues to pursue redress.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
This is an interesting document linked below (also attached) from the UK NHS, that offers insight for the concerned ME advocate into how they think you have psychological symptoms but never tell you directly in order not to tell the patient, as it will ostracise them and ruin' compliance' with behavioural modification. (Nb: contributions include T Chalder and P White).

Medically Unexplained Symptoms/ Functional Symptoms Positive Practice Guide

http://www.iapt.nhs.uk/silo/files/medically-unexplained-symptoms-postive-practice-guide-2014.pdf

A critique on an ME perspective of MUS (contesting psych claim ME = CFS = MUS) is here:
http://www.meactionuk.org.uk/In_Debate_Wessely_Sharpe_and_White.htm
 

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