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

Research 1st

Severe ME, POTS & MCAS.
Messages
768
Those TERM steps are absolutely chilling. They read like the protocols of some destructive brainwashing cult..

Well that's correct as CBT is brainwashing, self administered, via coercion.
In addition, religions are defined as cults, and psychiatry is a form of religion, a belief system (No science is needed).

We thus have the psychiatrist and psychologists practising the denial of organic ME and the ritualistic nature of delivering CBT GET for a form of MUS (CFS) as a form of therapy in the belief, this is right and just. No medical investigations and tests are needed. This is most unlike the practice of medicine, in which a doctor performs tests to see if they can decipher the reasons behind reported symptoms, or disease signs that may have been diagnosed in a clinic when in discussion with the patient.

So the cult label is correct for the ME sufferer experiencing the strong arm of CFS psych religious followers yes. However, the mental health patient, it's quite acceptable. It's also excused on the basis of a kind of be cruel to be kind treatment protocol of stopping them from somatizing, stopping them from having medical tests, and stopping them thinking about being 'ME'. The sad fact is, there are a small minority of misdiagnosed (psych patients), who are mentally ill , who do respond to CBT and GET. We usually hear of them in the media, and on-line citing absurd recovery claims. (See youtube).

The problem we have is the psych CFS 'researchers' excuse is that most CFS is psych and ME doesn't exist. Yet we know the honest observation, is maybe only 10% of CFS patients are psych patients, and so as that's a fact, the other 90% who are biologically ill, can be ignored and go elsewhere in the view of those who deny ME. Except there is no elsewhere to go!

This psych CFS lobby's mindset is: Defiance, and stubbornness. A refusal to see the real risk of what is happening by destroying the legitimacy of organic ME (via psych CFS) and leaving ME patients without appropriate care, and without legitimacy. Yet patients need this legitimacy to get medical treatment!

The same situation would occur if we created a condition called CFS/MS with no diagnostic tests. The genuine MS patients wouldn't recover and would be left without a care package, a small percentage of psych MS would response to CBT GET. Orphans aren't liked by everyone, especially by the people who caused the person to become homeless in the first place.

The Swedish news, is simply a one-way mindset in action. It's not ignorance (biomedical research in CFS has been around for decades), it's defiance, and approved refusal to allow for subsets in their 'theories' of what CFS is (MUS) in their minds.

With better biomedical research this should change in the next few years, aided by the genuine ME patients remaining visible, learning the science themselves, and correcting those with outdated knowledge.

In a country like Sweden, with that achieved ME patients who are harmed by the 'therapy' can remind practitioners who dismiss their suffering (from CBT GET) that they will sue for any damages that occur in these 'behavioural clinics'. We now know, that ME CFS has no evidence base that it is primarily a mind-body fatigue disorder. There is no evidence for that at all, even in F48.0 PACE trial participants. Hence people claiming ME CFS = MUS, will likely end up in court once their ideas end up harming a patient, who has money, or knows someone influential who can put their story in the media about how they relapsed with CBT GET.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Orphans aren't liked by everyone, especially by the people who caused the person to become homeless in the first place.

The Swedish news, is simply a one-way mindset in action. It's not ignorance (biomedical research in CFS has been around for decades), it's defiance, and approved refusal to allow for subsets in their 'theories' of what CFS is (MUS) in their minds.

Hmmm. . .looks to me like a group of grown educated well connected people having a collective temper tantrum. Their position makes it really hard to believe but all the signs point to that being the case. Even in the state I'm in it can almost make me laugh at the sheer silliness of their behaviour.

Somebody needs a time out.
 

mango

Senior Member
Messages
905
There was a meeting on Friday, between politicians and patient organisations.

Rädda Gottfriesmottagningen are cautiously optimistic, reporting that the meeting went well considering the circumstances and that the board seems to have changed their minds and won't be clumping diagnoses together as MUS, and won't be procuring psychiatric treatment for somatic illnesses.

The decision to not renew the Gottfries Clinic's contract still stands.
However, Gottfries will presumably be allowed to make an offer like everybody else when the new procurement process starts.

Source: https://www.facebook.com/RaddaGottfriesmottagningen/posts/932894663459830

No promises on paper so far, though. Personally, I wouldn't breathe a sigh of relief just yet...

Next step will be to try and make sure that the details of the procurement protocol reflect a biomedical view and are appropriate to patients' needs. The proof is in the pudding, right? I'll be keeping my fingers really really tightly crossed...

The next meeting is expected to take place in late January and/or February 2016.
 
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Hip

Senior Member
Messages
17,949
It should be pointed out that Prof Gottfries's pièce de résistance treatment of ME/CFS, the Staphylococcus toxoid vaccine which his studies showed could fix around 50% of ME/CFS cases such that they could return to work, was taken off the market in 2005, in spite of the fact that this vaccine was almost certainly one of the most efficacious ME/CFS treatments ever discovered.

Prior to 2005, Prof Gottfries was treating ME/CFS patients at his clinic in Sweden with this remarkable Staphylococcus toxoid treatment.

The manufacturer of the Staphylococcus toxoid vaccine, Berna Biotech in Switzerland (now called Crucell), took the vaccine off the market in 2005 because new EU and US rules required them to upgrade and modernize their production process for this vaccine, which would have cost the manufacturer $900,000. As they did not think this was economically viable, they discontinued the vaccine (in spite of Prof Gottfries protests), leaving numerous patients in Sweden without this critically important medicine that gave many their life back. So for the want of $900,000, ME/CFS patients lost a very effective ME/CFS treatment.

I am sure if this Staphylococcus toxoid vaccine was still available, Prof Gottfries's clinic would not be facing the axe.

More info about this vaccine here: Staph vaccine to treat CFS??
 

mango

Senior Member
Messages
905
RME (the Swedish National Association for ME patients) has kept on working really hard on this, sadly to very little avail :(

In January RME sent their comments on the specifications of the upcoming procurement to the Healthcare Committee (Västra hälso- och sjukvårdsnämnden). In short:
  • Diagnosis must be according to the Canadian Consensus Criteria, G93.3
  • Treatments must be in line with the international guidelines = IACFS/ME's primer
  • Emphasized patients' right/need to have access, continuously over time, to a medical specialist who has a biomedical approach and adequate knowledge about ME/CFS
  • Reiterated how important it is that the severely ill get appropriate care (including for example home visits and adapted hospital beds to ensure their access to emergency care and -treatments)
  • Critizised the biopsychosocial approach and its inherent risks of harm etc
  • Emphasized the need for a biomedical approach
  • Stressed the need for biomedical research
A request for proposals has now been published, with a detailed specification of requirements, and is (from my personal point of view) a hugely disappointing read... although, it seems to be a tad less bad than their previous specifications (MUPS, with references to Fink as a role model :nervous::depressed::mad:).

In short:
  • Diagnosis and treatment of fibromyalgia, long-term non-malignant pain and ME/CFS
  • Must have a biopsychosocial approach in line with national and international models [what models they are referring to is not specified - mango]
  • Must have an evidence based approach
  • Diagnostic critera for FM: American College of Rheumatology 1990/Wolf et al Arthritis and Rheumatism Vol 33, No2, February 1990
  • Diagnostic critera for ME/CS: Canandian Consensus Criteria [great! - mango]
  • Treatment must be carried out by an inter-professional team
  • Treatment must consist of at least 8 but no more than 20 treatment sessions (where only the first and last session have to be individual [meaning, not a group session? - mango])
  • Treatment can include, among other things: pharmacological treatment, functional improvement and/or symptom relief, self-management help and info/knowledge aiming for improved quality of life
  • Treatment methods besides adapted physical exercise/activity could be for example activity- and energy mapping/management, Pacing, relaxation techniques, CBT, ACT, motivational interview
  • The need for [disability and mobility] equipment/aids must be carefully considered, first and foremost focusing on supporting and facilitating but not passivating
(I can't help noticing that much of the wording sounds as if it's taken straight out of a BPS handbook... The word "biopsychosocial" is repeated many times throughout the document. "Biomedical" on the other hand is never mentioned.)

RME's comments on the above are published on their Facebook page.

To sum up:
  • Disappointed that their chance to influence the specification of requirements has been so limited (
    * the Healthcare Committee's meeting was held very close to the deadline
    * only one person from each organisation was allowed to attend the meeting
    * confidentiality clause meant not getting any info ahead of time and not allowed to discuss it with anyone else in the organisation etc), and also:
  • The formal comments that were handed in in person by the RME representative were "misplaced"(!) by the Healthcare Committee, and therefore weren't read until after the RFP already had been finalized and published...
  • The biopsychosocial approach is not in line with evidence based treatment for ME/CFS. Risk of harmful treatments. We need biomedical treatment.
  • International treatment guidelines (IACFS/ME's primer) aren't even mentioned; risk of harmful treatments
  • Clumping these three diagnoses together is unhelpful; there's a risk that the service provider lacks adequate knowledge and experience of one or a couple of the diagnoses
  • Lack of focus on medical and pharmacological treatment
  • No medical care specified for the severely ill
  • Doing biomedical clinical research isn't required of the service provider. The current service provider, the Gottfries Clinic, offers this, and it has been -- and still is -- very valuable, both in national and international contexts
  • People living with ME/CFS is the only one of these three groups that have no other alternatives among medical care providers in the region
  • Asks the chairperson of the committee for a clarification: will the services in question be biomedical care in line with international guidelines for treatment of ME/CFS, and not treatment of psychosomatic symptoms in line with the biopsychosocial model?
In their Facebook post RME adds:

"[...these specifications aren't written out of ignorance], seeing that the patient organisation RME has highlighted both research, the international guidelines, the risks of non-medical treatments and the actual needs of the patient group repeatedly throughout the process."

"In the document it isn't very clear what type of medical care will be procured for each of the diagnoses respectively, and because of this RME West has decided that they cannot endorse this specification of requirements."

My personal thoughts on this would be that despite all the obvious problems and although it seems very unlikely at this point, there's still a wee chance that something good (biomedical) could possibly come of this. I hope. I guess it all depends on who puts in an offer, and how far they would be bending the specifications? However, it's clearly disappointingly and worryingly wide open for the BPS crowd... and I'm afraid it would be extremely difficult for anyone with a biomedical approach to compete cost-wise with, for example, a BPS CBT group therapy based proposal...

Keeping my fingers crossed, hoping for the best!

(Big apologies if I've mistranslated something or made mistakes when summing things up. All mistakes are my own, not RME's. Please let me know if you spot any errors, so I can fix them.)
 
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Kati

Patient in training
Messages
5,497
Hi @mango, thanks for keeping us updated. The news are not good but what is just as worrisome is the tactics they have used to prevent patients from getting organized and ready for the meeting.

It is devastating and i am afraid that British Columbia has gone the same route :(

I am hoping we can have new papers published which will show proof of pathology so we can all move well away from BPS BS. :ill:
 

mango

Senior Member
Messages
905
Thank you, @Kati :) Yes, it is devastating and there are some obvious similarities between our situations... :(

Yes, their tactics really are worrisome and unfair :( I wonder if it's even legal... Personally, I'd say it's disability discrimination. (There are no healthies in the RME workgroup, only PWME.)

Why allow only one person from each organisation to attend the meeting? Why not allow the PWME to bring at least a support person to accomodate for their disability?

Having a crucial meeting only one week before the comments must be submitted. How many days are then lost to PEM and recovering after the meeting?

Having had no chance to prepare, and not being allowed to share any of the new information from the meeting with anybody else, now this person alone has to try and analyze the 23 pages long specification of requirement (not an easy read!), and with no help from anybody else (because of the confidentiality clause) try to write comments on it that represents the needs, demands and views of the patient organisation on behalf of the whole patient group. Why not allow at least a support person to help out?

Personally, I believe crucial documents like these shouldn't ever come with legal clauses that stop members of the board from discussing them openly at board meetings etc. Also, I believe it's really important that board members from all the patient organisations involved (not only the ME/CFS orgs, but also those representing people living with pain and/or fibromyalgia) are allowed to collaborate and discuss these things between the boards/orgs.

Tight deadline, PEM, cognitive issues, memory problems, mental exhaustibility etc etc etc...

Regardless, I think the RME representative did an excellent job :)

But then, the document was "misplaced"?! :grumpy: :eek: o_O :mad: Even though it was submitted on time and in person by her; she actually went to the Healthcare Committee's office and handed over the papers herself.

The comments never reached the decision makers, not until it was too late, and only because she herself discovered that her document hadn't shown up in the politicians' public post lists (where all the incoming and outgoing post is recorded, what are they called? "Diarium" in Swedish), so she contacted them to find out what had happened...
 

mango

Senior Member
Messages
905
Potentially very good news! :)

The deadline for submission of offers has passed, and -- much to our surprise -- Gottfries came out on top! :)

However, no contracts are signed yet. I don't know all the details of how processes like these work, but I believe it's still possible for others to appeal this decision/recommendation?

The new contract would be for 1 January 2017 to 31 December 2019, with a possible extension for 2 more years.

We don't know yet what kind of services/medical care Gottfries would be allowed to offer, if they get the new contract.

Read the whole notice ("tilldelningsbeslut"), in Swedish, on Rädda Gottfriesmottagningen's Facebook page:
https://www.facebook.com/RaddaGottfriesmottagningen/posts/1060891207326841

Keep on keeping your fingers crossed, please! :)
 

Living Dead

Senior Member
Messages
199
Weigthing:
Price, diagnosing: 40 %
Price, treatment: 30 %
Competence: 10 % < Is that even legal?? :wide-eyed:
???: 20%

Also, they valued competence as 0 (!) for both applicants. It's like they didn't even pretend to try. The just wanted the cheapest option.

I think they promoted the BPS model to allow a competitor to claim interest, so that Gottfries would be forced to deliver a cheaper bidding. Maybe they also assumed that BPS treatment would be cheaper.

Don't worry Snowdrop, there is no way they are going to choose the other option, given the prices. (It would 99% sure be illegal anyways, the only other option now is a new bidding round with new secret biddings.) The question is, how much can Gottfries do with less money? Not much harm, anyways.
 

PhoenixDown

Senior Member
Messages
456
Location
UK
Mango said:
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!").
I think Simon Wessely might disagree with that, take a look at this paper: http://www.ncbi.nlm.nih.gov/pubmed/10450194 .
Simon Wessely said:
These data provide preliminary evidence of reduced functional B vitamin status, particularly of pyridoxine, in CFS patients.
 
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mango

Senior Member
Messages
905
New update on Rädda Gottfriesmottagningen's (Save the Gottfries clinic) Facebook page today.
https://www.facebook.com/RaddaGottfriesmottagningen/posts/1141609279255033

Google translated version:
Västra Götaland has done it again. Under the new contract, we get to keep the Gottfries clinic, but not the doctors. The VGR administration has in the new text of the agreement, contrary to all the practices, abandoned the procurement documents and made several major changes.

One of these means that four out of five doctors at the Gottfries clinic may no longer treat patients, because, despite being a doctor and also Sweden's foremost experts on ME/CFS and fibromyalgia, they have the wrong training. According to the wording, only neurologists, algologists (pain medicine) and rheumatologists can participate in the business.

There are no rules as to which doctors should or may treat some patients, this is something that VGR has made up on their own.

The four doctors who VGR don't want to allow treat ME/CFS and fibromyalgia patients all have extensive experience in working with this patient group. Two of them are probably Sweden's most knowledgeable physicians in the field. They have both studied and treated patients for decades: Professor Gottfries has been doing it since the early 90s. Patients in Sweden are queuing to get help from them. The reception has 500 patients in the queue but no contract after November.

To recruit new, skilled doctors is basically impossible because there are so few interested in these diseases. It would take many years and huge financial investments in the form of education for them to reach the same excellence. The consequences of the new contract thus become two: Decades of experience is lost, and patients will no longer have access to knowledgeable doctors. Sure, we need new doctors! But not at the expense of those we already have.

If you have not done it already, or if you want to do it again, please write to the politicians in the Västra hälso- och sjukvårdsnämnden. Tell them that the administration wants to take away our best doctors and point out that it is the knowledgeable physicians at Gottfries reception that we want to keep. It sure isn't the building itself we are interested in. Obviously, it needs to be be clarified.

This board, Västra hälso- och sjukvårdsnämnden, has made the decision:
http://cfwebb.vgregion.se/troint/detail_namndstyrelse.asp?namnd=HSN%20v%E4stra

Send mail also to the members of the Health Board:
http://cfwebb.vgregion.se/troint/detail_namndstyrelse.asp?namnd=HSS

The members of the Regional Council:
http://cfwebb.vgregion.se/troint/detail_namndstyrelse.asp?namnd=rf

The members of the other health boards:
http://www.vgregion.se/sv/Vastra-Go...so--och-sjukvard/Halso--och-sjukvardsnamnder/
o_O:(:cry: ...:grumpy::bang-head::mad:
 

Effi

Senior Member
Messages
1,496
Location
Europe
:aghhh::(:bang-head::eek::cry: So a rheumatologist is supposed to treat ME patients? And a pain specialist is supposed to treat the substantial subgroup of ME patients that have no pain symptoms whatsoever? Let's hope the neurologist is not of the kind that interprets everything as psychosomatic, that would be the rotten cherry on top of this total disaster.

:ill:
 

mango

Senior Member
Messages
905
New update on Rädda Gottfriesmottagningen's (Save the Gottfries clinic) Facebook page today.
https://www.facebook.com/RaddaGottfriesmottagningen/posts/1145639908851970

Google translated/sloppy English version:
What has Västra Götaland changed that results in this: four out of the five doctors at the Gottfries Clinic won't be allowed to continue working there, according to the contract they already won? We have read some of the mail that has been requested from VGR. This is how it is:

Västra Götaland wrote in the specifications of requirements of the tender documents that the care provider in question should have certain personnel categories "employed or have access to staff via subcontract". Nothing about that only those doctors would be allowed to work under the contract. The Gottfries Clinic writes in their letter to VGR:

"The Gottfries Clinic has in the tender reported that access to all the categories of personnel listed in the tender specification of requirements is and will be available during the contract period. In addition, the Gottfries Clinic also has access to specialist doctors who work at the clinic and who have done so during the time the clinic has been active. The Gottfries Clinic intended that these specialists will also participate in the execution of the commission, which is evident in the tender and has been known by VGR."

Even though VGR knew this and approved Gottfries, the following wording is now appearing in the final contract:

"In order to avoid misunderstandings, the caregiver should ensure that only personnel belonging to the above categories of personnel be involved in the execution of the commission that the contract refers to."

To go from "these doctors are needed" to "only those doctors may work under the commission" is obviously a big change. Especially since VGR knew that the majority of the doctors at the Gottfries CLinic don't have these specialties. And yet Ulla Berggren, who is the adminstrative official responsible for the text, claims that nothing has changed. She replies to Gottfries:

"The text that therefore was copied into the contract document is the same as found in the specification of requirements and in full accordance with the original text of the same. We do not see any need for a meeting about this..."

This is symptomatic of how the administration has behaved throughout the process. We assume that even Ulla Berggren is able to read and can see that these are completely different wordings. Just when everything seemed to be finished, why do the administration create a final barrier that results in the patient group losing almost all skilled physicians, when we have been so clear about the importance of doctors who are knowledgeable about the diseases? And the claim that no change has been made and therefore the issue does not need to be discussed?

(There are pictures of the original letters (in Swedish) attached to the above post on Facebook.)

o_O:eek::confused::thumbdown::bang-head::(:mad:
 
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mango

Senior Member
Messages
905
Update from RME West on Save the Gottfries Clinic's Facebook page:

https://www.facebook.com/RaddaGottfriesmottagningen/posts/1146485248767436

Sloppy English translation
Patients who have contacted the VGR have been told that RME supports the procurement process and the contract that was sent to the Gottfries Clinic. That is completely untrue - we have been protesting and commenting throughout the whole process, and we have clearly expressed our criticism of the changes in the new contract.

One member was also told that IVO [the health and Social Care Inspectorate] had demanded that there must be a neurologist at the clinic. That is completely untrue. IVO isn't saying anything about what kind of staff must be present at the clinic, but they criticized the coordination between the Gottfries clinic and primary care, the fact that Gottfries after just a few visits are handing over patients to the health centers that lack knowledge about the treatment. The reason why they do so is because of the contract with VGR. It only allows the clinic to diagnose and recommend treatment, not taking responsibility for the continued care. An appropriate response to IVO's criticism would therefore be to invest in training for primary care [staff] and to expand the contract instead of what they are doing now, restricting it or even making it completely impossible for the Gottfries clinic to continue treating patients.

RME is obviously in support of neurologists, rheumatologists and algologists. However, we do not want to replace some of the country's leading experts on these diseases with doctors that lack experience working with fibromyalgia and ME/CFS.

The tender specification of requirements said: "The care provider should have the following categories of staff employed or have access to the staff via subcontract: (...)
* Licensed doctor with any of the following specialties: Algology, neurology or rheumatology."

However, it did not say that only they would be allowed to take part in the assignment!

Maria Thilander
Chairperson RME West
 

mango

Senior Member
Messages
905
Update from Rädda Gottfriesmottagningen on Facebook
https://www.facebook.com/RaddaGottfriesmottagningen/posts/1146608118755149

Sloppy Google/English translation:
Save the Gottfries Clinic on Facebook said:
Patients' access to skilled doctors is an issue for healthcare politicians, not for lawyers!

We have been told that Nicklas Attefjord (MP [The Green Party]) has urged all healthcare policy makers in the region to avoid answering questions from patients and patient associations as VGR's lawyers are now looking into the issue. In other words, he is immediately going for the law to figure out if it is legal to change the contract in retrospect and by that stop the doctors, but we would like to know: Why is it desirable? What is the political reason for wanting to remove four of the five experts on fibromyalgia and ME/CFS? Such a fundamental change in the conditions for an already vulnerable patient population must surely have a justification?

Neither RME West nor the relatives and patients who have repeatedly been in touch with [VGR] have received an answer to that question. Unfortunately, only the following conclusion remains, then: [VGR] does not want fibromyalgia and ME/CFS patients to receive biomedical care by experienced physicians. And they are willing to bend the law on public procurement in order to get their way.

This is very much a political issue. We are hoping that the healthcare politicians who are involved, and those who are now getting informed about the decision, will take on their political responsibility towards the patient group and take action to stop the changes in the contract and revert to the procurement deal the Gottfries Clinic won. And by that making sure that the patients will continue to have access to doctors who have been researching and treating these diseases for decades. And maybe even urge Nicklas Attefjord to ask himself why it is desirable to leave patients without a knowledgeable physician, not whether it's legal.

(Please continue contacting your politicians and explain why it is so important that we get to keep the doctors. Write your own or use parts of the above text as you see fit.)
 
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