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

mango

Senior Member
Messages
905
Absolutely devastating news for people with ME and/or FM in Sweden: The Gottfries Clinic in Mölndal will no longer be allowed to treat ME or Fibromyalgia patients :aghhh::nervous::depressed::(:eek::mad::cry:

The Gottfries Clinic is a biomedical ME and Fibromyalgia specialist clinic. It was opened in 1998, while professor Gottfries himself has been studying ME since the 1950s. They do clinical research as well, and it's part of their current contract to educate medical professionals in the region.

There are only two public healthcare ME/CFS specialist clinics in Sweden today (Gottfries and Stora Sköndal) and one private clinic (Gotahälsan).

This is an enormous loss to PWME all over the country... a massive setback...

The background, in short: Three public healthcare physicians (GPs?) filed an official complaint to IVO, The Health and Social Care Inspectorate, sometime before March 2015, objecting to Gottfries offering ME patients B12 injections as a part of their treatment ("Not evidence based!"). They also object to the part of the contract that states that after initial investigation, diagnosis and treatment at the Gottfries clinic, patients will be sent back to the primary healthcare centers who from then on will be responsible for continuing their care, treatments, writing the necessary papers for sickness benefit/compensation, insurance purposes etc.

According to a decision made by the public health politicians (Västra hälso- och sjukvårdsnämnden, en av fem hälso- och sjukvårdsnämnder i VG-regionen) on September 30, when Gottfries' current contract runs out on 30 November 2016 ME/FM patients will from then on only be offered care and treatment "with a clear bio-psycho-social direction".

In the details about the new procurement protocol (I don't know the correct word... "upphandlingsunderlag" in Swedish?) it says it has to be "in line with national and international models, with a clear bio-psycho-social direction, evidence based for patients with medically unexplained symptoms (MUS) and/or chronic non-malignant pain".

According to the minutes of the meeting, this decision was based on "Dialogues with the current service provider and a legal expert. Information and criticism from the Social Insurance Agency (Försäkringskassan), research, medical guidelines, and national and international guidelines have also been considered."

They then go on to say that "there's a center in Denmark that is fully comparable [...] Forskningsklinikken for funktionelle lidelser." (FFL) That's Per Fink's center!! You might recognise his name from the ongoing Karina Hansen horror story... :nervous::depressed::mad::eek::vomit: ...and that FFL "offers consultations, training for healthcare professionals incl physicians, and video lectures on the Internet, as well as recent and ongoing research.", "The training covers, among other things, an intro course on Acceptance and Commitment Therapy (ACT) that has proven to be a successful way to treat difficult cases with functional symptoms." As you probably are aware, the FFL uses the TERM-model, which obviously only makes it even more appalling...

Needless to say, this is the stuff of nightmares... absolutely horrifying.

(I believe I'm not the only one suspecting that there's much more to this story than what's in the official documents... Closing down a whole well established clinic simply for being too generous with the vitamins?? :mad::depressed::vomit:)

RME, the Swedish National Association for ME patients, is already hard at work trying to find possible solutions, to have this decision changed. However, it's a huge challenge and a very difficult task for a relatively small group of people already struggling to keep up...

Ideas and suggestions would be hugely and warmly appreciated!

Here's an advocacy page in Swedish, it will be regularly updated with the latest news:
Rädda Gottfriesmottagningen ("Save the Gottfries Clinic")
https://www.facebook.com/RaddaGottfriesmottagningen
 
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sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
I'm not sure whether to 'like' your post or not, Mango. That's awful, and in the light of all the positive news and developments of recent times, it's almost incomprehensible. And this all seems to have been sparked by B12 shots, for heavens sakes? This sounds like the work of zealots.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
And this all seems to have been sparked by B12 shots
This has happened elsewhere, including in the UK. It seems the three reports from the Belgian and Dutch governments that show a CBT/GET approach is a failure under real world conditions are being ignored.

This is really sad news for anyone wanting treatment in Sweden.
 

Effi

Senior Member
Messages
1,496
Location
Europe
It seems the three reports from the Belgian and Dutch governments that show a CBT/GET approach is a failure under real world conditions are being ignored.
They're even ignoring these reports themselves! Ordering a new study by the same organisation to rehash all the significant studies *again*, to decide *again* which approach has more scientific backing: biomedical, or biopsychosocial. It's what we call 'resistance to learning'.
 

SOC

Senior Member
Messages
7,849
Why is it these reporting doctors have such a strong objection to treating ME patients? It's not like B12 injections are dangerous, or even slightly risky. Okay, you don't think they work. So what? There are many treatments out there that may not work, but you're not going after them. Why go to this much effort to prevent people from getting something as relatively innocuous as B12 injections?
 

Effi

Senior Member
Messages
1,496
Location
Europe
Why is it these reporting doctors have such a strong objection to treating ME patients? It's not like B12 injections are dangerous, or even slightly risky. Okay, you don't think they work. So what? There are many treatments out there that may not work, but you're not going after them. Why go to this much effort to prevent people from getting something as relatively innocuous as B12 injections?
spending money on B12 = less money in their bank account. I think it's as simple as that. We're just collateral damage.
 
Messages
84
I am from Denmark.

This is absolutely horrible. I don't even know what to say. It honestly does not make any sense how Sweden and Denmark are both taking steps backwards, especially with everything that is going on in Norway.

The worst part is that this does not surprise me one bit. I have been met with nothing but neglect in the Danish health care system, which is supposed to be one of the worlds best. Lucky for me, I never got to far into the Danish health care system. Once they had done all possible tests to exclude different diseases I was met with the classic ''Sooo... Sanchez... Have you ever considered the possibility that you might be depressed?''. I can still remember the anger, and I knew then what was going to happen if I kept pressing for a cure in the Danish health care system. I would be forced on anti depressants which is basically how they treat everything in Denmark.

That Swedish people suffering from CFS / ME will now have to go through the Danish health care circus from hell is an absolute travesty.

This is also the first time I have heard of this ''Per Fink'', and from everything I have read about him I am absolutely outraged and disgusted. Sadly it does not surprise me one bit.

Just to show how horrible things are going to become in Sweden and already are in Denmark. The center that is ''fully comparable'' to the Swedish center in Denmark, the ''forskningsklinik for funktionelle lidelser (FFL)'' is run by Per Fink as OP mentioned.

This is Per Finks stance on the treatment as of 23.09.2014 on CFS...The following is Danish

''I videnskabelige studier er det kun kognitiv terapi og gradvist stigende fysisk aktivitet, som har uomtvistelig dokumenteret effekt ved kronisk træthedssyndrom. Nogle patienter og patientforeninger er fortørnede over dette.''

This translates into : ''In scientific studies only Cognitive therapy and gradual physical activity has shown indisputable documented effect with Chronic fatigue syndrome. Some patients are upset by this.''

Yep, you have read correctly. Indisputable documented effect....

And he wonders why patients are upset....
 
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Research 1st

Severe ME, POTS & MCAS.
Messages
768
Dont' worry about this too much, as it's too late in history now for this dumb decision to capture ME patients for very long as the independent science research has evolved not regressed. (Deleting a biomedical setup for a psychiatric, is politically motivated). So this foolish decision won't last, as within 3-5 years the science will alter forever, especially if congenital ME (mother to baby) is proven by new variant pathogen discovery.

Until then, misdiagnosed patients trapped in alleged psych CFS (who have ME) need to have a battery of specialist tests, not offered to patents at the time of diagnosis. These become, unofficially, inclusion based ME tests, rather than exclusion based tests for a condition you don't have (hence all the tests are normal).

Fukuda CFS = unexplained fatigue. If you explain the fatigue, then you don't have CFS.

On that basis,to overturn a misdiagnosis of CFS you need tests to show explained reasons for your symptoms.

The most obvious tests to alter a CFS diagnosis to a neurological condition are those for autonomic dysfunction, leading to orthostatic intolerance (hallmark of ME). E.g. you struggle to sit upright or stand up, due to symptoms.

Try and order a:

TILT Test, Valsalva Manoeuvre, 24hr-5 day ECG, 24hr blood pressure monitoring. 24hr urine sodium, 24hr urine aldosterone. blood test for renin/aldosterone paradox (seen in POTS). That should help a significant proportion of ME patients, trapped in a psych CFS misdiagnosis.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
The authors of the PACE trial have a lot to atone for.

In theory they'll get sued in a large scale law suit (patients or their surviving family members), or their allied universities or medical journals will who published their 'science' and then refused to release the full study data.

A big problem is this:

If a pathogen is detected in ME, people who claimed ME didn't exist, will be legally liable for spreading the infection, because the patients were not believed due to a theory (not based on science) was sold throughout the Western world as a therapy. One said to be safe and effective. A treatment package for ME as psych CFS.

The more moderately affected patients (told they are somatizing and need CBT GET) thus would have had babies and unwittingly infected their children. These children, will then also be tested for the pathogen (congenial infection not dissimilar to HIV).

Either way, claiming a therapy works in ME, when no science actually was performed, and the patients didn't have ME (but F48.0 Chronic Fatigue) is scientific misconduct, if the theory was based on false data and the incorrect patient cohort.

CBT and GET to reduce symptoms in Myalgic Encephalomyeltiis (G93.3), is clearly false.

Even in psych CFS (F48.0) there is very weak evidence for only a marginal effect.

It seems if the pathogen studies work out, any atonement will be in the future, the Universities or the Journals get fined for backing scientific misconduct. The people who caused it, will be long retired. That' what was agreed, hence the redaction in the 'discussions' over the infection being triggered by vaccines, I mean, the belief in ME.
 
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Sidereal

Senior Member
Messages
4,856
I get that. :) The point is, how do they justify it to other people -- the public, the authorities. "This is so horrible! These doctors are giving B12 injections! We have to stop this now!" Why don't they get laughed out of the room?

They would probably say that B12 injections are quackery which gives the patient illusion of treatment which then delays their access to real treatment which in their view would be CBT/GET.
 

Asa

Senior Member
Messages
179
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