News from Scandinavia

Midnattsol said:
Yet another great article from the same journalist, this time including information on two-day CPETs and how deconditioning does not explain the findings.

Why do many people with ME and chronic covid get sick from activity?
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And there was an article from the public broadcaster NRK yesterday about a young man bed bound with with ME and EDS who didn't get the help he needs, and a very moving reportage on the evening news about severely ill Emilie who has been bed bound in darkness for years and on the very fragile situation she and her family is in.

Some very informative media coverage about ME these days in Norway! Are we finally moving forward from the "ME-debate"?
 
New blog post by @MittEremltage, highlighting some of the harmful consequences that are affecting pwME due to the political decisions of Region Stockholm.

Really well-written and important, as always. Great work, thank you so much MittEremltage! :thumbsup: It's a horrible situation, and I really feel for those who are affected :(

Har primärvården i region Stockholm växlat upp?
https://mitteremitage.wordpress.com/2024/06/18/har-primarvarden-i-region-stockholm-vaxlat-upp/
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Has primary care in the Stockholm region turned up the heat?

A severe ME sufferer has shared with me an email she wrote to the Patient Complaints Board because she, like so many others, had her LDN medication suddenly withdrawn by her primary care provider.

I would like to highlight this despite the fact that it is an individual's experience, because this case is, as far as I can see, different from the other cases covered by the Patient Complaints Board's principle case (I have written about it before here) and I am concerned that the situation is escalating.

The principle case is mainly about patients who have had drugs prescribed through the now defunct Bragée ME centre and who have not received a continued prescription when the patient has been referred to primary care for further care.

In the current email to the Patient Complaints Board, it appears that this person also initially received her medicine via the ME clinic at Stora Sköndal, but the difference is that primary care has continued to manage and prescribe her medicines, including LDN, for several years after she was discharged from there. The ME clinic was closed in 2021.

The email states that the patient moved and had to change health centres at the end of last year, but that handover has taken place from both doctor and patient and that the new doctor assured the patient's husband as late as January this year that there would be no problem whatsoever in renewing prescriptions for the medicines she was on, including LDN. It was so uncontroversial that he even said no initial doctor's visit was needed.

"When the doctor and my husband spoke on the phone in January, the doctor said that he had read the letter and medical records from two years ago and there was no problem renewing my prescriptions. He could even do it without seeing me first. At the end of May, I tried to renew my LDN prescription but received a chat message in the app AlltidÖppet that it would not be renewed because there is no evidence for "my problems". The doctor who had previously said that he would prescribe without hesitation had now suddenly changed his mind." (From e-mail to the Patient Complaints Board)

The doctor wrote the following to the patient:

"The medicines you are requesting to be prescribed/renewed are not indicated for your condition. We must follow the guidelines and scientific evidence that exists when choosing different treatments. A similar case has been raised for discussion at a medical meeting as well as with the head of operations and the medical officer at the health center and we have concluded that we should that we should take into account the scientific evidence available. Therefore, your prescription will not be renewed. Best regards [name of doctor]." (From e-mail to the Patient Complaints Board)

Suddenly, the doctor uses the same justification of lack of evidence as the doctors in the cases in the Patient Board's principle case, even though this is about a patient who has been prescribed her medication in primary care for several years. He refers to other similar cases and it sounds as if the health centre has taken some kind of policy decision that applies to all prescriptions.

The letter also states that the doctor has not even recorded his decision not to renew the prescription for LDN, even though it is a crucial change in the patient's treatment. At a follow-up home visit, the doctor stands by his decision and the patient is not even prescribed medicine so that she can taper it down in the same way as it was tapered up, even though she is extremely sensitive to medication.

"He didn't listen at all, saying that there is no evidence for it and that the clinical experience that does exist is made up. He equated my request not to change what works with a patient going into a surgeon's surgery and asking for an operation for no reason at all, despite the fact that LDN was prescribed on the recommendation of a psychiatrist who also knows ME and the effect it has on me. It transpired that he didn't know I was on LDN for more than ME but he was in a confrontational defence mode and it didn't matter, he just went on even harder about there being no indication for LDN at all."

"I asked for a tapering prescription so that I can quit LDN in the same way it was introduced, but he refused because there is no established tapering protocol. He said it doesn't matter how I have reacted and how it will affect me, because there is no evidence."

Treating patients in this way is bizarre.

I wonder what makes the doctor reverse his own initial judgement? What makes him deviate from a patient's care plan, where primary care has been making prescriptions for years, without making an individual assessment and without documenting his decision?

Who actually made this decision and why?

The guidelines on off-label prescribing clearly state that there must be science and proven experience to support the use, otherwise prescribing must take place within clinical studies. What this means in practice - how many studies, what type of studies and what proven experience means in this context - I do not know.

But if it is the case, as primary care claims, that there is no evidence for prescribing this type of drug to ME sufferers, then it is the ME doctors who should be criticised for prescribing what they should not prescribe. Not the patients.

However, it does not feel like this is fundamentally about evidence, but more like there is some kind of war of words going on between primary care and health care policy where ME sufferers end up in the firing line. That the doctors are protesting against the politicians' decisions and, just like in Västerbotten, choosing to sacrifice the patients without blinking.
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(Not ME.) POTS is mentioned in an article in one of Swedens two largest evening newspapers today.

Christina Applegates nya sorg: Dottern sjuk
https://www.expressen.se/noje/christina-applegates-nya-sorg-dottern-sjuk/
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Christina Applegate's new sadness: her daughter is ill

Christina Applegate's 13-year-old daughter Sadie has fallen ill.

In the podcast "Messy", the actor talks about her grief.

- I hate that you have it like this, she says, addressing her daughter, writes Page Six.

Christina Applegate has previously spoken about her difficult time with MS.

- My life is kind of hell, she has previously said in "Good morning America".

Now, her 13-year-old daughter Sadie Applegate says she also suffers from POTS.

POTS is short for postural orthostatic tachycardia syndrome.

- I don't really know what it is but it has something to do with my autonomic nervous system and it affects my heart. When I stand up, I get very, very dizzy and my legs get weak and I feel like I'm going to faint," she says in her mum's podcast "Messy".

MORE ABOUT POTS

POTS is short for postural orthostatic tachycardia syndrome.

It is a dysfunction of the autonomic nervous system that causes a drop in blood pressure and sinus tachycardia, especially when standing up.

Symptoms:
Palpitations
Blurred vision
Nausea
Headache
Loss of fitness
Fatigue

Source: Internetmedicin

Applegate's grief after her daughter's illness

Her daughter says she has suffered from the symptoms for a long time and has struggled to get the right diagnosis.

Christina Applegate is sad that her daughter is sick.

- I hate that you feel this way. I'm sorry, but I know you're going to be okay. I am here for you and I believe in you. Thank you for highlighting and drawing attention to it," the mum says in the podcast.
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I'm not familiar enough with the terminology in English for politics to know what it would be called, but a representative from a political party has asked the current minister of work in Norway about the situation for pwME and how nothing really has changed the last few years despite clear instructions that things needed to improve.
The question and answer can be read here (In Norwegian)

A patient advocate noted how the answer was a non-answer: The minister of work replies with something along the lines of "we have instructed the services to improve" but is ignoring that the patients are reporting that several years after this instruction there has been no improvements. What frustrates me most is that a long covid advocate, who has been clear LC is not ME, have commented that it's a good answer, and thus also ignoring that the answer is full of things that should be but is not the reality.
 
(Not ME specific.)

Sweden: Patient researcher Sara Riggare (https://www.riggare.se and https://www.spetspatienterna.se) and Therese Scott Duncan at E-health and Health Data at Uppsala University, are inviting people to participate in their latest research study.
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"What matters in healthcare in 2024"

This survey is for those who regularly visit the healthcare system, physically or digitally, and are older than 18 years. In the survey, we want to explore what is important to you in different areas related to continuity and participation.
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https://doit.medfarm.uu.se/bin/kurt3/kurt/8871475
 
New blog post by @MittEremltage, highlighting some really worrying changes in Region Stockholm, seemingly linked to the Oslo Consortium.

Region Stockholm uppdaterar vårdprogram för ME med ovetenskapliga påståenden om KBT och gradvis utökad aktivitet
https://mitteremitage.wordpress.com...staenden-om-kbt-och-gradvis-utokad-aktivitet/
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Region Stockholm updates ME guidelines with unscientific claims about CBT and gradual increase in activity

What the hell is Region Stockholm doing?

The guidelines for Myalgic Encephalomyelitis (ME) on viss.nu has been updated in recent days. Not many changes but what I see is changed for the worse.

Like this under the heading Management treatment:

"Curative treatment is currently lacking, but some patients recover after, for example, CBT or gradually increased physical activation."

This statement is baroque. As far as I know, there is no evidence to support that CBT and gradually increased activity cures ME. However, there is evidence that physical activity can be harmful. [...]

It is a direct patient safety risk!

When I take a closer look at who is responsible for the guidelines and compare it to previous versions, I see a new name for the context. It is the psychologist Elin Lindsäter, who works at Gustavsberg Health Centre and Karolinska Institutet. She is also part of the so-called Oslo Consortium, which I have written several posts about before. They have on their agenda to change the view of, among other things, ME from being a disease to being about incorrect thought patterns and fear of activity that maintains the symptoms. To overcome this, this group advocates CBT and gradually increasing activity.

Last autumn, we could hear the same Lindsäter advertising on Swedish radio for an upcoming study in Stockholm that she will be conducting to investigate CBT for, among other things, post-covid.

Lindsäter then shared SR's article with the following comment on her own Linkedin:

"Short report in Ekot today that gossips about the clinical study that I and my colleagues are preparing for in primary care in the Stockholm region. It is particularly important when the care choice for long-term pain, exhaustion disorder and ME/CFS is discontinued in 2025 that we equip and investigate new methods for identifying and treating severe fatigue/fatigue in the first line."

The change in the ME guidelines on viss.nu thus appears to be part of a larger plan.

At the same time as the region is updating its knowledge support with bizarre non-scientific claims, Stockholm's primary care is denying patients treatment on the basis that there is no evidence. There is an ongoing case of principle on this, which will now be discussed politically later this year.
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:grumpy::grumpy::grumpy:
 
Another very important blog post by @MittEremltage, taking a detailed look at the seriously worrying changes to Region Stockholm's guidelines for ME/CFS. Do click through and read the whole article. Thank you so much, MittEremitage :thumbsup:

Genomgång av ändringar i vårdprogram för ME i viss.nu
https://mitteremitage.wordpress.com...-av-andringar-i-vardprogram-for-me-i-viss-nu/

:arghh::eek::cry::mad::banghead::grumpy:

ETA: Summarised really well by a pwME on social media (auto-translated):

"The overall change in Viss.nu is to become vaguer, lumping ME with conditions that cause various forms of fatigue, and obscuring the situation and needs of the most severely ill."
 
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Science Norway: Victoria Augustine falls ill from everyday activities like taking a shower or family visits: “I end up bedridden with a feverish feeling and body aches"
By Ingrid Spilde

"Victoria Augustine Trulsen, 25, can remember the first time she thought: This can't be normal.

She had been struggling for a while after having mononucleosis. But there was never any doubt that when autumn came, Trulsen would start 10th grade – the final year of lower secondary school.

However, that plan crashed already on the first day of school.

'I managed half a day of school. Then I just had to go home, and I was bedridden afterwards. It was really scary,' Trulsen tells sciencenorway.no.

'At first, I clung to what the doctors said – that you can be unwell for a long time after mono. I'm glad I didn't know it would last this long.'

This was the start of a period where Trulsen was very ill. She spent most of her time in bed and was unable to complete the school year. She was eventually diagnosed with ME/CFS."

---

"She frequently exceeds the limits of what she can tolerate, and then the first symptoms appear.

'My pulse rises, and my face swells up. My skin becomes red and shiny. My hands shake, and my body starts to ache. Then I lie down if I can. I draw the curtains and put in earplugs' says Trulsen.

Sometimes she manages to save herself and avoid crashing. But it's not that easy.

'You want to do so much. I live a bit on adrenaline and just want to take care of this or that task,' says Trulsen.

The result can be a serious PEM episode."

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"However, pacing is not as easy to achieve as we might think.

A characteristic feature of PEM is that the reaction to activity is often delayed. It can come several hours after the activity itself. Often, the reaction does not fully set in until the next day. Additionally, the amount of energy you have at your disposal can vary from day to day.

This variability makes it extra difficult to know which activities one can tolerate and how much activity triggers PEM."

---

"Sommerfelt believes part of the problem is that PEM is often completely invisible to others.

'During an activity, it's not possible for others to notice that someone has gone over their limit,' he says.

And when the crash comes, perhaps the next day, no one notices that the person is in bed and feeling terribly unwell.

Many ME/CFS patients have expressed that they wish other people could understand how profoundly ill they become.

Cotton would like people to understand that cheering them on doesn't help.

We are so used to thinking that it is healthy and positive to push ourselves. We cheer and motivate each other to keep going. But for people with PEM, the effect can be the exact opposite, Cotton believes.

'Pushing, persuading, and cheering – come on, you can do this, just a little more – is one of the most dangerous things you can do. By exceeding our tolerance limit over time, we risk long-term deterioration,' she says.

'Instead, we need those around us to encourage us to rest and take breaks. We need to hear them say: 'Sit down, put on sunglasses, go and rest for fifteen minutes!' And then you can come back so we can be together again afterwards,' she says."
 
However, pacing is not as easy to achieve as we might think.

I think this is an important point that needs to be more prominent. Though it does also open the doors to hacks and opportunists everywhere to play the expert at 'teaching' patients how to do it.
 
mango said:
Another very important blog post by @MittEremltage, taking a detailed look at the seriously worrying changes to Region Stockholm's guidelines for ME/CFS. Do click through and read the whole article. Thank you so much, MittEremitage :thumbsup:

Genomgång av ändringar i vårdprogram för ME i viss.nu
https://mitteremitage.wordpress.com...-av-andringar-i-vardprogram-for-me-i-viss-nu/

:arghh::eek::cry::mad::banghead::grumpy:

ETA: Summarised really well by a pwME on social media (auto-translated):

"The overall change in Viss.nu is to become vaguer, lumping ME with conditions that cause various forms of fatigue, and obscuring the situation and needs of the most severely ill."
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More about this, in today's blog post by @MittEremltage. Much appreciated as always, thank you! :thumbsup: A massive thank you to the independend activist/patient advocate(s) who contacted Viss.nu to request these changes, excellent effort! No thanks to RME (the Swedish ME Association) though, their silence is very telling...

Viss.nu har gjort vissa ändringar
https://mitteremitage.wordpress.com/2024/07/06/viss-nu-har-gjort-vissa-andringar/
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Viss.nu has made some changes

The sentence about CBT and GET in the guidelines for Myalgic Encephalomyelitis (ME) on viss.nu has been removed since yesterday afternoon. This is good, but unfortunately the rest of the problematic changes seem to remain. [...]

The remaining changes may seem small and insignificant, but taken together they give the guidelines problematic direction where more vague concepts about disease and treatment are allowed to take up space while important information about the most severely ill and PEM are now removed.

I hear that some of you are once again thinking that what has happened is due to ignorance. That those who updated the guidelines do not know enough about ME. But I would say that this is more about an ideological choice.

It's so clear that they're sort of pulling a fast one and trying to get things to slip through the net. Thinking that no one will notice. What has happened now follows the same pattern as with the autumn news from Stockholm University. They started publishing outright lies and then modified some things, but not everything, after our reactions.

It is so ugly because it is as far from a scientific approach as you can get.

This is the same group of people who were involved in the news at Stockholm University. And Elin Lindsäter is part of it (see picture). The changes are in line with the ideology of the Oslo Chronic Fatigue Consortium and are certainly part of their advocacy work to change the perception of ME (and what they call "chronic fatigue syndrome") and to ensure that their treatment model is used. [...]
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Sean said:
However, pacing is not as easy to achieve as we might think.

I think this is an important point that needs to be more prominent. Though it does also open the doors to hacks and opportunists everywhere to play the expert at 'teaching' patients how to do it.
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One important missing detail is that even if done perfectly, it offers no guarantee. That seems to be a common and misguided belief, and how it's talked about strongly implies it. Independent of the fact that most people simply can't.

It's certainly the best strategy, given the complete inability to predict what can lead to deterioration, but plenty have paced ideally and still gotten worse.

But of course that's usually where lots of nonsense about nocebo and expectations causing outcomes, no matter how much cherry-picking that requires. That BS will probably never die. Even in some distant future where all disease is a thing of the past, there will be people wishing it were all true, and that's all that's required for beliefs like this to stick around.
 
rvallee said:
It's certainly the best strategy, given the complete inability to predict what can lead to deterioration, but plenty have paced ideally and still gotten worse.
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Yep. It has not in any sense made me better. It has just helped slow the decline down.

Which is no small thing, can even be a critical thing, and we are not in a position to be fussy about what few tools we have to hand. But it is not even a 'treatment', let alone a cure.

It is just all we have for now.
 
Sean said:
Yep. It has not in any sense made me better. It has just helped slow the decline down.

Which is no small thing, can even be a critical thing, and we are not in a position to be fussy about what few tools we have to hand. But it is not even a 'treatment', let alone a cure.

It is just all we have for now.
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Yes, pacing is not a treatment, pacing by itself will not result in any improvement in the underlying condition. And to suggest it might is no different to the assertions that recovery is possible for all by the BPS cultists. Pacing only helps minimise any harm from over exertion and PEM. The best rational for pacing is that for most will help minimise the ‘feeling/consequences of being ill’ associated with PEM.

What follows is not based on research data, but it is what I see as the current patient perspective:

If a person with ME is lucky and their current condition allows the possibility of some spontaneous improvement pacing only contributes to creating the best conditions to allow that improvement to happen, but for those experiencing this it is important to recognise that any such improvement is not being caused by pacing so it will only go as far as the underlying condition allows. Other than the very few (6%?), for most this will mean improvement to a ceiling. In such circumstance the belief that pacing is curative, which is particularly likely where pacing has been operationalised as a therapeutic intervention, can be harmful, as it encourages the patient to continue pushing beyond their ceiling, triggering PEM and resulting in a subsequent over exertion induced relapse.

Not pacing results in PEM which may for some cause short term deterioration but further for a significant proportion will result in a worsening of the underlying condition which becomes long term or even permanent. For those that are unlucky to be experiencing deterioration in their underlying condition not caused by over exertion, pacing will not prevent this, though it will minimise the chances of over exertion and PEM compounding that deterioration.

For the very severe the thresholds for triggering PEM may be so low that even the very basics of daily living trigger it, resulting in rolling PEM. Very restrictive pacing may be necessary to avoid or minimise further deterioration, but again of itself is not curative.

In summary pacing of itself is not curative, though for some it may contribute to the best circumstances for spontaneous improvement, rather it helps reduce the negative consequences of PEM. For many pacing also helps minimise any further deterioration due to over exertion. However for some their underlying condition may deteriorate independently of their activity levels such that pacing can not prevent it, merely minimise any additional deterioration from over exertion.
 
I think a useful partial parallel might be diabetes where it is necessary to 'pace' intake of carbs and insulin. However well the diet and insulin are controlled, it doesn't cure diabetes, but does help to avoid 'crashes'. They are management strategies for avoiding worsening, not cures.
 
mango said:
Another very important blog post by @MittEremltage, taking a detailed look at the seriously worrying changes to Region Stockholm's guidelines for ME/CFS. Do click through and read the whole article. Thank you so much, MittEremitage :thumbsup:

Genomgång av ändringar i vårdprogram för ME i viss.nu
https://mitteremitage.wordpress.com...-av-andringar-i-vardprogram-for-me-i-viss-nu/

:arghh::eek::cry::mad::banghead::grumpy:

ETA: Summarised really well by a pwME on social media (auto-translated):

"The overall change in Viss.nu is to become vaguer, lumping ME with conditions that cause various forms of fatigue, and obscuring the situation and needs of the most severely ill."
Click to expand...
I've started a new thread for Elin Lindsäter's related research study (currently recruiting):
https://www.s4me.info/threads/swede...ue-a-feasibility-study-lindsäter-et-al.39238/
 
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