Sweden: Have the ME and CFS clinic in Gothenburg found a loophole to avoid the diagnosis ME?

[The ME Inquiry Report]

In 2024, a new ME clinic was opened under the auspices of the Västra Götaland region. At the time, the website stated that the focus was on investigation and time-limited treatment and that patients would then have continued care via primary care.

Here is my summary of the information that was available in May 2024. Auto translated link: New ME clinic in Region Västra Götaland

In the spring 2025, there were rumors that the clinic was removing ME diagnoses and I contacted the clinic and asked questions about their medical investigation process. What emerged from the contact with the responsible manager and physician is very worrying and today I have published a series in three parts where you can read my communication with the clinic but also my analysis of their arguments.

In short, it seems that the clinic thinks it has found a loophole in the Canadian criteria that allows them to avoid establishing the diagnosis of ME in their patients. This is despite the patients meeting the criteria for ME and living with PEM. Instead they seem to use the term persistent physical symptoms, or functional somatic symptoms, which they say are differential diagnoses to ME

Here is a link to an auto-translation of the first part: What is really happening in VGR's ME care? Part one (The other two parts are also published and links is to be find in this post)

 

[Utsikt]

This is exactly what I fear will happen when patients and advocates ask for «more help» or «more clinics» or whatever, because the BPS folks are in a positions to grab the power and use it to further their agendas.

 

[forestglip]

Impressive investigation!

It looks they want to appear to be working within Canadian criteria guidance, but if they are really not diagnosing anyone with ME/CFS, they're almost certainly not following the "spirit", or original intent, of the criteria.

 

[The ME Inquiry Report]

This is exactly what I fear will happen when patients and advocates ask for «more help» or «more clinics» or whatever, because the BPS folks are in a positions to grab the power and use it to further their agendas.

Yes, me too. All statements and claims need to be carefully specified and that is what we need. Our demands need to be well supported by the facts and research available. The Swedish ME Association has just thrown out a bunch of unspecified things they want in a debate article. It makes my stomach hurt.

 

[The ME Inquiry Report]

Impressive investigation!

It looks they want to appear to be working within Canadian criteria guidance, but if they are really not diagnosing anyone with ME/CFS, they're almost certainly not following the "spirit", or original intent, of the criteria.

Thank you. Well, if I hadn't heard the rumors about them removing and replacing diagnoses, I might also have been fooled by their claim that they diagnose ME using the Canadian criteria. That sounds good, but if you read the Canada criteria, you see that they are not in line with their intentions.

 

[Utsikt]

Yes, me too. All statements and claims need to be carefully specified and that is what we need. Our demands need to be well supported by the facts and research available. The Swedish ME Association has just thrown out a bunch of unspecified things they want in a debate article. It makes my stomach hurt.

I think we have to go further. We need to get people that understand the difference between good and bad science and medicine into the positions that determine who’s going to be in charge of the clinics, research, etc.

Otherwise, we’re playing a game of chance, and indirectly gambling with the lives of patients. At best, it’s naive.

 

[Liie]

My GP offered to write a referral to this clinic for me. I am glad I declined. So this hits close to home for me.

I thought the psychosomatic theory was on the decline in Sweden. This is a wake-up call for me.

 

[Liie]

ME Inquiry Report: Thanks for the investigation!

Two things about which it would be interesting to get information:

1. What patients of the clinic thinks. How could we get in touch with patients? Maybe we could get RME could post on their mailing list that someone is interested in getting contact with patients.

2. How many diagnosis for ME/CFS and "persistent physical symptoms" have they actually made? It should be possible to make a freedom of information request for this. Although I don't really know how that works.

The things ME Inquiry Report writes sounds really bad but it's hard to know how bad without those two pieces of information.

I will (in a very slow ME pace) look into if this can be done.

 

[CorAnd]

I read the blog and I am honestly scared.

Scared that doctors at a clinic devoted to ME/CFS believe that patients who fulfill all the Canada criteria are ill because of their thoughts and need psychological treatment. Their statement that PEM exists in other diseases is wrong. They probably mean ”tiredness after exertion”, but that is not PEM.

How is it possible to be ”överläkare” and know less about ME/CFS than the average user on this forum… ?

 

[Utsikt]

2. How many diagnosis for ME/CFS and "persistent physical symptoms" have they actually made? It should be possible to make a freedom of information request for this. Although I don't really know how that works.

I suspect you’ll have a hard time getting that information from them. But if you do, I would consider sending the request to the administration of the hospital that the clinic belongs to.

Relevant info might be:

1. Number of patients seen at the clinic
2. Number of patients with an ME/CFS diagnosis
3. Number of patients that received a new ME/CFS diagnosis at the clinic
4. Number of patients that received any diagnosis other than ME/CFS

I think the wording might be important to get right. The might say that it’s impossible to extract some of the information without undue effort, so try to make it so that they might not be able to say that for everything.

 

[Trish]

It seems from the correspondence with the doctor that he has no idea what PEM is, equating it with post exertional fatigue. I wonder whether it would be worth sending him some more detailed explanations of PEM from various sources, including our fact sheet.

 

[The ME Inquiry Report]

I thought the psychosomatic theory was on the decline in Sweden. This is a wake-up call for me.

I am glad that my texts could be a wake-up call for you. For me, who has been covering these issues for many years now, the growing influence of the BPS lobby has been extremely clear. But I know that I am quite alone in reporting on this issue in Sweden.

What do you think is needed for more people to wake up?

 

[The ME Inquiry Report]

How is it possible to be ”överläkare” and know less about ME/CFS than the average user on this forum… ?

Perhaps it is not just that they lack knowledge but that it is an ideological position of chosen ignorance?

 

[Utsikt]

Perhaps it is not just that they lack knowledge but that it is an ideological position of chosen ignorance?

Yup. It’s impossible to get to the BPS position of ME/CFS by using logic and following the evidence. The only explanations can be incompetence, bias or both.

 

[Sean]

They are trying to eradicate the ME and ME/CFS diagnoses, and turn them back into 'fatigue' syndromes, and hence 'functional'.

This general trend and desire has long history, starting with the introduction of the CFS name in 1988. Wessely tried to unilaterally change the UK's WHO classifications on it, until the WHO publicly rebuked him.

This arbitrary re-labeling issue has been raised on patient forums a few times.

Psychosomatics is the holy grail of the psych world, and they are never going to let it go. They don't care how much they have to corrupt science to claim a victory, to finally 'prove' they were right all along. It is so brazen and cruel. I really struggle to understand how they keep getting away with it. Is medicine really that broken?

 

[Hutan]

Thank you @The ME Inquiry Report.

I think you misunderstood me. What I wrote was that it is not possible to distinguish between ME/CFS and persistent physical symptoms based on the patient's experience and symptom description. You need to do a broader biopsychosocial assessment and not just focus on the biomedical aspects to get a holistic view.

If you have a previous diagnosis of ME/CFS and still meet the diagnostic criteria, you should keep the diagnosis. If you meet the diagnostic criteria for another diagnosis that excludes ME/CFS, the previously incorrectly made diagnosis can be written off.

I expect there is a huge amount of bias in the allocation of ME/CFS diagnoses. Female? Any depression or anxiety diagnoses in your medical records? Any suggestion of childhood trauma? Or did you annoy the assessor or your GP or come across as a bit upset about your illness? Then no ME/CFS diagnosis for you.

They are trying to eradicate the ME and ME/CFS diagnoses, and turn them back into 'fatigue' syndromes, and hence 'functional'.

For more on that topic, we have this thread: The disappearance of ME/CFS