News from Scandinavia

An excellent letter-to-the-editor by physiotherapist and mother of a severe ME patient. It is written for a health political journal and directed towards the Danish Minister of Health Magnus Heunicke.

As many of you will remember, the Danish Parliament overruled the medical establishment this year by deciding that ME should be defined as a physiological illness and that international consensus criteria must be followed. Since then nothing has happened besides objections from doctors on the Parliament's decision.

Vibeke Ilsøe Gustavussen: Trods politikernes indgriben svigtes ME-patienter stadig
google translation: Despite the intervention of politicians, ME patients are still being failed

In March, the Parliament agreed that the conditions for Denmark's 14,000 ME patients must be improved and the approach to the disease be changed. ME was thereby recognized in Denmark as a somatic disease, as it is also classified by WHO. It no longer hovers in psychosomatics and is no longer categorized under the term 'functional disorders'. Completely in line with international developments in understanding the disease.

However, since the Danish Parliament's decision in March, Danish doctors have raged over the politicians' interference in a matter that they believe is theirs alone, rather than accepting that it is now recognized from the Parliament that the efforts for the patient group are far from sufficient.

Ignorance and lack of interest in ME in Denmark have left the patients and their relatives in a void for years. Many of the sick have no contact with the health care system and receive no medical help.
The hospitals believe that the task of monitoring and treating these seriously ill and bedridden patients lies with the general practitioners, while the general practitioners believe that it's a task for the specialized hospital departments. Nobody takes responsibility for these very sick people.
 
mango said:
An illustration of what level the Swedish ME deniers prefer to keep the debate at... This woman is a professor and consultant (has more than 40 000 followers on Twitter).

If there were medals for patience, I know someone who deserves a big gold one..! :trophy@


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That was just plain bizarre. So many false claims. When you have to resort to this much nonsense to promote an ignorant opinion it's clearly indefensible. It's religious dogma at this point, it's not supposed to make sense.
 
Kalliope said:
However, since the Danish Parliament's decision in March, Danish doctors have raged over the politicians' interference in a matter that they believe is theirs alone, rather than accepting that it is now recognized from the Parliament that the efforts for the patient group are far from sufficient.

Ignorance and lack of interest in ME in Denmark have left the patients and their relatives in a void for years. Many of the sick have no contact with the health care system and receive no medical help.
The hospitals believe that the task of monitoring and treating these seriously ill and bedridden patients lies with the general practitioners, while the general practitioners believe that it's a task for the specialized hospital departments. Nobody takes responsibility for these very sick people.
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The logic behind defending this is incredible. The status quo is so clearly a complete and total disaster for the very reason of this obstinate belief in a psychogenic thing with zero evidence, and the response is angry, aggressive even, ranting that, yes, this is what we deserve and in fact more of this is needed.

The privileges of a profession, even medicine, cannot trample on the rights of individuals. It's insane that there is such strong insistence in maintaining that the rights of ME sufferers should not only be denied but done so by forcefully rejecting the very idea of informed consent. When the lives of so many people are threatened, authorities have a legal obligation to act, even if those responsible are medical professionals themselves.

Nobody is taking responsibility and yet everyone wants it to remain the same even though it doesn't affect them, with a result that is nothing short of catastrophic. I don't see any arguments in favor of it, just petulant insistence that the lives of ME sufferers should remain null and void. Out of mere beliefs. What insanity.

The banality of evil may be unimpressive but it is no less grotesque than the direct use of violence, which this adds up to. It's simple criminal negligence to allow this.
 
Two informative articles today about ME and PEM from the Norwegian news site ABCNyheter.

The first article interviews doctors and researchers Kristian Sommerfelt and Katarina Lien. They explain the basics and warn against GET as treatment approach.

Sommerfelt doesn't believe the knowledge about PEM among health professional is sufficient.
- I think there has been a good increase in the knowledge of PEM among those who have been in contact with ME sufferers over time, such as teachers, GPs, physical therapists and occupational therapists.
- But many find it difficult to acknowledge that PEM is there and how it behaves, and that it means one cannot advice that the patient to just "go for it".

He explains that the usual advice for ME is to try to find a constant level of activity that works, and then slowly increase steadily. It's called graded exercise treatment.
- There, in my opinion, the research does not support that it provides improvement in strictly defined ME, where PEM is present. On the contrary, I have repeatedly met patients who have had severe deterioration of the disease, which can last for many months. But I believe that most ME patients have come to the conclusion that this is a bad idea and that few people are now increasing the level of activity in this way, whether or not they are recommended.

Katarina Lien talks a bit about her research on exercise and ME and says:

- Exercise is important in almost all diseases, but ME patients appear to be get worse by activity beyond their tolerance limits. It fits with what the patients are saying. So it might also mean that exercise is not the right medicine for these patients, rather it can lead to deterioration.

ABCNyheter: Anstrengelsesutløst sykdomsforverring (PEM) ved ME: - Som en reservetank som gir straff etterpå ved bruk
google translation: Post Exertional Malaise (PEM) in ME: As a reserve tank that gives penalties after use

Two ME patients are also interviewed and talk about living with ME.

She believes the most important thing you can do as health and professional professionals is to take patients seriously, listen to them and understand the symptom PEM.
- Then you will be able to achieve better facilitation, avoid unnecessary worsening of symptoms and the patient may experience increased quality of life. If you don't understand this symptom, you may be fooled when meeting an ME patient who manages to do something one day, but not necessarily the next.
- There is no medicine yet that can make us healthy, but understanding PEM is something which can be done for ME patients, it will give us an easier path in the system and better quality of life.

ABCNyheter: ME-symptomet PEM: - Man blir så glad fordi man føler seg friskere, men BANG!
google translation: The ME symptom PEM: - You're so happy because you're feeling better, then BANG!
 
Kalliope said:
It fits with what the patients are saying.
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This is rare and needs to be said.

Whenever people are saying that "ME is real", what it means is that what patients have consistently reported and has been researched as a flu-like type of illness for decades is the real description of this disease. It doesn't mean anything else and it is in sharp contrast with the made-up BPS nonsense that has nothing to do with reality and what patients report, essentially built on the assumption that what patients report is incorrect, because reasons.

It's not a difference of opinions, there is only one set of opinions that is completely at odds with what is reported by patients and has been studied through careful observation. I have no opinions, I only ever reported the symptoms and their presentation. In isolation they are puzzling, in aggregation between millions of patients they do make sense. Opinions have no place in this.

To say that being psychological does or does not mean that it's real or not is completely besides the point, it is making a completely different point, a distortion of what is said. What we mean is that we report one thing, factual, and a completely different set of opinions are believed and used in standard practice. What we mean by "ME is real" is that what patients report represents reality, not the distorted and self-inconsistent narrative invented to kick this disease out of medicine.
 
Interview with Ragnhild Holmås, who has ME and is battling prejudice towards invisible illnesses with humour as tool. Until now she's used Instagram as a platform, but next year she will be publishing a book titled "But you don't look sick".

I really enjoy her sense of humour. The article begins with: Sometimes Ragnhild (31) wishes she had a frying pan. Mostly in order to strike people asking her "have you tried yoga?". :laugh: I hope some of her writing will get translated to English in time.

From the interview:

- We have a language for the acute and the temporary. The things you can send flowers to and say feel better. But what if the improvement doesn't come?
A few second passes.
- And why do people have this intense urge to advice me to drink smoothies?

...
- Now there are, somewhat simplified, two sick roles to choose from: the sad, suffering, or the jubilant "thank-you-for-the-cancer" type... I think we need to expand the repertoire.

NRK: "Men du ser ikke syk ut"
google translation: "But you don't look sick"
 
Opinion piece in Tidningen Ångermanland, written by a pwME:

Hjälp att dö – eller hjälp att leva för ME-patienter? ("Help to die - or help to live for ME patients?")
https://etidning.allehanda.se/369/T...-att-do-eller-hjalp-att-leva-for-ME-patienter
Google Translate said:
Now is the time to stop talking about helping the seriously ill die. Instead, give us help to live.

The woman in Nordingrå, who was seriously ill in ME, did not have to die. With the right help from healthcare and care, she could have lived for several more decades - a life of limited nature, but with much left of what makes life worth living. Instead, her illness was seriously worsened. She was constantly experiencing new symptoms, and finally, with such severe plagues that she saw no alternative but to end her life. [...]

Director of Health Lena Carlsson claimed in an interview in SVT this week that this has changed, that the knowledge is now available. I did a quick survey of ME sufferers in Västernorrland right after that statement. And yes, it has gotten better than 15 years ago.

Nowadays, only half of the doctors question, mistrust, misdiagnose and give incorrect advice and treatments. The other half gives ME patients a good reception, with respect and commitment. But not one of the respondents had met a doctor in Västernorrland with the knowledge to diagnose ME and give the right treatment and advice.
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Director of Health Lena Carlsson claimed in an interview in SVT this week that this has changed, that the knowledge is now available
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What good is that if it's disputed in practice and not covered in medical school? That knowledge has been available for decades, hasn't made any difference because it was rejected, contradicted even. It's impossible to move ahead without explicitly acknowledging that the last 30 years have been a complete, and avoidable, failure.

Ultimately it's that it's not taught properly in medical school that makes any progress impossible. Physicians receive very little updates to their education during their career, relative to what they cover in training. There are thousands of diseases and various health problems, that's not the right way to do things, it just gets lost in the mix because "fatigue". In truth it would take years and years for a whole generation of properly trained physicians to make any difference, to change the balance.

That's the typical thing: people keep saying change is coming and/or happening, but it never does. 50% failure, and I very much doubt that, is atrocious, especially when talking about giving harmful advice. About 90% of the relevant information we have today was already known before the BPS sabotage. It actually has to be disseminated, otherwise that's just as good as the IOM report, which some jackasses still pretend to read and claim it somehow supports their prior beliefs (referring to a recent twitter thing if anyone remembers), sitting there, being now available, but not having any impact.
 
mango said:
Oh? Sorry, it was open access when I posted the link. Maybe they will reopen it later?

ETA: It's still open access for me. I printed the article to pdf, would be happy to send a copy through PM, just let me know.
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Probably geoblocked. Oh well, I'm sure there will be more coverage.

I'm good, thanks, I probably wouldn't remember much anyway, I usually just skim articles.
 
#MEvårdsaknas: När vården gör de sjuka ännu sjukare… ("When healthcare makes the sick even sicker…")

https://mevardsaknas.wordpress.com/2019/12/01/nar-varden-gor-de-sjuka-annu-sjukare/

Google Translate said:
Myalgic Encephalomyelitis (ME) is a serious illness that requires contact with health care for a variety of reasons - but at the same time, contact with health care is so high a strain that it often makes the sick even sicker.

In this post, we have gathered facts about ME and the cardinal symptom post-exertional malaise together with people with ME's own experiences of what about receiving healthcare entails too high a strain.
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mango said:
#MEvårdsaknas: När vården gör de sjuka ännu sjukare… ("When healthcare makes the sick even sicker…")

https://mevardsaknas.wordpress.com/2019/12/01/nar-varden-gor-de-sjuka-annu-sjukare/
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This speaks to me. I am foregoing a GP visit this year because what's the point? Nothing has changed much (including unrelated problems that still haven't been fixed years later and apparently won't until I can take charge because no one else will), it's too far away, the clinic is noisy, brightly lit, chaotic, demands .5-2h wait on uncomfortable plastic chairs with periodic blaring on overhead speakers and the pediatric waiting room from which constant wails and crying escape because the door is never closed.

And for what? A standard blood test and a shrug. Which is a good preventative measure but it's just not worth it. I generally forget half the stuff I should be mentioning anyway because I am utterly drained by the time I get to the consult room and anyway there's always the damn 1 symptom per consult so why bother? And that's with my father doing most of the work to make it happen in the first place. And I'm not even bedbound, it's way worse than that for many patients.

The myth is that we are heavy utilizers of medical resources. It's probably true early on, but the experience of interacting with health care services is so incredibly unpleasant and ultimately useless that I think that most of us simply don't bother after a few years. An issue well worth studying because, as is tradition, the different between perception and reality is pretty much, well, reality.
 
Region Västra Götaland, Sweden, are currently reviewing their healthcare for patients with ME. They ended their contract with the Gottfries Clinic (biomed) a few years ago. They currently have a contract with Smärthjälpen (BPS), a private pain clinic, which also includes pain and fibromyalgia patients.

https://opengov.360online.com/Meetings/vgregion/Meetings/Details/1655808?agendaItemId=255836

Excerpts from the report:
Google Translate said:
"In 2019, international research studies have been published that question the relevance of the biopsychosocial model to ME. Criticism has been made against cognitive behavioral therapy and gradual physical activity (graded exercise therapy / GET) as treatment methods for patients diagnosed with ME were questioned.

Low-intensity and progressively increased physical activity is considered successful in the treatment of fibromyalgia, but even low-intensity activity can be directly detrimental to patients with ME.

According to the National Board of Health's review of 2018, patient associations for ME in the country have also questioned cognitive behavioral therapy as a method, even though they are positively attuned to psychological support in matters of lifestyle adjustment [6].

There is no evidence-based support for psychological interventions which aims to learn to live with ME, which means that the state of knowledge about how to facilitate the life situation of those affected is low. In the rehabilitation programs, the focus is on getting the patient to accept their situation and then learning to adjust their activity level to cope with the disease."
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Google Translate said:
"The Western Health Board has commissioned the Group Office to review how the current assignment that Smärthjälpen has under current agreements will be handled when the agreement expires."

"The contract runs over two years and is valid until 2019-12-31 with the possibility of a 24-month unilateral extension from the Västra Götaland region. Six-month extension is made from 2020-01-01 to 2020-06-30"

"The purpose of the review is to recommend, based on the current state of knowledge, an appropriate treatment of the patient group and a suitable mode of operation. The recommendations are based on information search on the various diseases, external monitoring, views from patient associations, data on health consumption and current guidelines"
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Google Translate said:
"The patient perspective in this needs assessment has been taken into account, partly through the views expressed by the National Board of Health's Knowledge Survey of 2018 and partly by sending short questions to a selection of patient associations. E-mail has been sent to the ME Association, RME Väst, the Swedish Association for ME Patients and Gothenburg fibromyalgia compound under the Fibromyalgia Association "

"The ME Association has responded that the most important thing is that a proper investigation is done in the primary care with regard to co-morbidity and differential diagnosis. According to the ME, the primary care physician needs more knowledge, and better support in differential diagnosis. Deficiencies in the investigation methodology then cause shortcomings in both diagnosis and further referral to specialist care.

Patients also express a desire to receive help with medication according to the clinical experience available, primarily focused on symptom relief. Some patients may also need conversation support in order to mentally / mentally cope with the changed life situation.

The ME Association also feedback criticism of the Smärthjälpen (current contract) which they believe is uninterested in the diagnosis of ME and avoids helping people with ME. Patients with ME wish to return the contract with Gottfries Clinic. They are also in a positive position to collaborate on the development of care for ME patients and, above all, wish to organize a scientific seminar for doctors, officials and politicians based on the latest research findings on ME in order to
to facilitate cooperation. "

RME West - The National Association for ME Sick wishes to highlight the following points:

* The patient group needs a purely ME clinic. Because the knowledge situation is weak, dedicated staff are needed who can follow research and look for knowledge on their own. Therefore, it does not work to add ME care as a side task for a pain or stress clinic. The present arrangement has resulted in much less ME care.

* It is necessary to allocate resources to follow research, as well as participate in conferences and international ME networks. It is desirable that the unit conducts its own ME research. Resources are also needed for supplementary investigations and customized premises, etc.

* Care must not harm patients. It is imperative that no care is provided that results in either temporary or permanent deterioration. All ME care must take into account and be based on how PEM (Post-exertional malaise) affects each individual patient.

* The current care agreement lacks both flexibility in treatment arrangements and the possibility of off-label prescribing of medicines. There is currently no evidence-based treatment, but patients are in dire need of help. The range within the patient group is large (severity, symptoms, age, etc.) and there are also large variations over time in the same patient. All this must be handled by good ME care.

* About 25 percent of the patient group is home or bed-bound. Today, these are completely without care. Home visits are required to meet their care needs. For some, it is possible to be transported to a clinic provided that customized waiting rooms are available. digital care meetings should be offered as a supplement.

The Fibromyalgia Patient Association did not provide any answers to the questions."
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Google Translate said:
"Conclusions

Initial care (diagnosis, treatment and rehabilitation) of all three diagnostic groups should primarily be done within the first line of care, with access to specialist / consultant support from specialist level. Diagnostics should be done in multidisciplinary teams.

Continued care for patients with mild or moderate symptoms should continue to be done within the first line of care, with specialist / consultative support from specialist level.

Continued care for patients with severe symptoms or particularly complicated conditions that make it difficult to investigate / diagnose or other parts of the care should be done in specialist care, after referral from first-line care.

The patient group with diagnosed ME should - as a patient group, for medical reasons be managed separately from the group with long-term non-malignant pain (unlike fibromyalgia which is considered a subgroup for long-term, non-malignant pain). "

"The treatment at specialist level for ME patients with severe symptoms or particularly complicated conditions should be gathered within a supply point in the region, preferably a private clinic linked to existing regional pain clinic with assignments around multimodal rehabilitation"
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Google Translate said:
"The mission to the specialized tender point should include;

A) Diagnosis, treatment and rehabilitation of complicated cases after referral from first line care

B) Support for primary care in the investigation, diagnosis, treatment and rehabilitation of mild to moderate symptoms

C) Training of general practitioners in first-line care with the aim of quality-assured investigation and rehabilitation of ME, fibromyalgia and long-term non-malignant pain.

* The supply point for specialist care in the Västra Götaland region regarding these diagnoses needs to have the capacity and competence for long-term care in the healthcare sector, for example being able to retain the responsibility for follow-up of medicines initiated at specialist level.

* Specialist care in the Västra Götaland region should also be able to contribute to research, and development of guidelines for these diagnoses:

A) For example, be able to record patient cases in research studies and contribute to the development of evidence-based care, such as treatment support in basic investigations in primary care, support in referral to specialist care in the Västra Götaland region.

B) Monitor international knowledge development and put it into practice, and be able to handle additional research and development assignments.

C) Participate in the Västra Götaland region's work on developing digital treatment alternatives to offer specialized care near home."
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Google Translate said:
"The current provider has shown compliance with agreements and good quality of care offered. However, deviations regarding deficiencies in the care chain have been reported.

Operations within the first line of care have on several occasions refrained from following Smärthjälpen's treatment recommendations for medicines on return. The justification stated has been that the recommended drugs are considered to have a high risk of creating a drug dependency. This has also affected the willingness to refer patients to Smärthjälpen.

Smärthjälpen, in turn, has reported that the health centers are remitting without prior investigation of patients to exclude malignancy or other underlying disease as stipulated in the agreement. This has meant that the referrals have been returned for an investigation to exclude so-called red flags so that patients can be offered care at Smärthjälpen."
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Google Translate said:
"Patients with ME / CFS have not been satisfied with the limit on the number of treatment interventions allowed by the agreement, up to a maximum of 8.

SBU report1 states that people with ME / CFS may need long-term support and health care in order to get the best quality of life, activity and participation in society as possible."
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Google Translate said:
Western Health Board, proposal for decision

"Responsible service person is assigned to ensure that Hospitals in Väster from 2021-01-01 will be responsible for investigation, assessment, diagnosis and treatment at specialist level of adults with ME with symptoms that are difficult and / or complex"
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mango said:
Region Västra Götaland, Sweden, are currently reviewing their healthcare for patients with ME. They ended their contract with the Gottfries Clinic (biomed) a few years ago. They currently have a contract with Smärthjälpen (BPS), a private pain clinic, which also includes pain and fibromyalgia patients.

https://opengov.360online.com/Meetings/vgregion/Meetings/Details/1655808?agendaItemId=255836

Excerpts from the report:
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This can be summarized as: just do your damn job, everything is still yet to be done, begin at step 0 and stop doing harm then work from there based on actual patient needs, not on what you personally prefer.

Bit implicit but as an evaluation of current practices, it's yet again a simple grade of zero. Complete and total failure. Refusing to do your job only works for so long, problems don't magically disappear this way. Now if only there were accountability, any at all.
 
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