Norway: Opinion piece by prof. Saugstad: Give ME patients help that works

Opinion piece in the Norwegian public broadcaster NRK by professor Ola Didrik Saugstad. He is a paediatrician and has been an important spokesperson for ME patients for decades with a particular engagement for patients with severe ME.

The mastering techniques KAT and LP have been tested in scientific studies. These studies have consistently had major methodological weaknesses, and upon closer examination, it turns out that the positive results that the supporters first reported, more or less disappeared.

However, it is not excluded that some ME patients have been assisted by coping techniques as mentioned above.

Patients are pressed unnecessarily
However, user surveys among ME patients show that 30-50 per cent are impaired by this type of treatment. Often the pressure is great from doctors, Navs and others to try such methods, and it is highly questionable that patients are pushed into treatment programs without documented effect.

This is part of what ME patients feel like abuse, and is an important reason for the polarization between those who claim ME is a stress reaction and those who want to focus primarily on biomedical causes.

Gi ME-syke hjelp som virker
google translation: Give ME patients help that works

 

I can’t thank Saugstad enough for the important job he has done for ME...

Still... at this point, I think it would be smartest to talk about the evidence on “our” side without giving other opinions any focus at all. Like in the Climate change debate, there is no longer two equal sides in this debate. We have the evidence, anything else is only opinions (that is not based on serious research). By mentioning them, we invite them into the debate - and “the polarization” is once again the only thing a bystander will remember.

 

Yes, Saugstad have done a lot, trying to educate by balanced information. As we know, that is quite a challenge. I agree with you a 100% on strategy, above all trying to avoiding polarization, not inviting to recycling for the billionth time, but given the history and climate, that is probably easier said than done, almost independent of any angle.

Hopefully Saugstad reaches one physician, it often seems like one at the time is the pace here. It will take time, but we’re getting there.

What I find most important here, is the point that patients in many cases experience pressure to go through actions that lack evidence. That’s not ok. If it just didn’t work and had zero risk to it, well then, I guess it would be a little easier to accept the approach of try and succeed/fail. But we do know that many patients get (irreversible) harmed. So how the f... official bodies and health authorities can pressure patients based on anecdotal evidence is a mystery and quite a disaster, as matter of fact a triple disaster.

1) you might ruin the chance of actually getting the person back to “health”.

2) the person probably end up as a major cost to society.

3) the person will probably end up having a significant risk of other health issues/problems due to not being able to even do minimum exercise.

If only interested in numbers/money, - Would someone in charge please do the simple maths to what this might cost? Instead, if done properly, not in a rush and without evidence, the chance of actually improving things and saving billions would be significant.

Needless to say, there will surely be a reply to Saugstad from the usual suspects, another one based on pseudoscience and taking us absolutely nowhere. It’s a shame polarization is all patients and others are left with.

As discussed many times before, the community should when addressing ME publicly, at least try to set the agenda without inviting to a polarized debate. That’s hard, but possible.

 

The opinion piece by prof. Saugstad has spurred the Norwegian Labour Party politician and member of Parliament Tuva Moflag to ask the Minister of Health how to secure ME patients equal treatment, based on newer research pointing towards ME as a physiological illness.

https://www.stortinget.no/no/Saker-..._KrM54E4tOUIclKeLACL4lMZgzE9G4iA4I285_7KyZmY8

 

Lightning Process coach Live Landmark replies to prof. Saugstad's opinion piece.

No one can say what "ME is" today. It is therefore unfortunate to give the impression of something else, and in the same breath advise against current public treatment advice , such as cognitive therapy or graded exercise, as it appears in the opinion piece Give ME-patients help that works.

...

The ME field is two-fold: those who have an old-fashioned biomedical understanding model in which head and body are separated (ME Association, some patients / relatives and some researchers). Those who have a more modern biopsychosocial understanding model in which head and body are interconnected (National Competence Service for CFS / ME, Public Health Institute, Directorate of Health, Recovery Norway, patients / relatives and some researchers).

...

It should be researched broadly on a condition that hits as hard as ME. But until you know more about which mechanisms are central, it can seem daunting to us who have been diagnosed when highlighting individual findings such as "metabolic and immunological changes", "energy production in the cells", "lactic acid level through physical exertion" or " low-grade inflammation, "which doesn't say anything about its cause or effect.

Incidentally, these marginal findings can also be linked to persistent overload and stress, and none of them is considered to be a "central disease factor".

Ikke frarøv ME-syke hjelp som virker
google translation: Don't rob ME patients help that works

 

We need a better eye rolling emoji for times like this!

just doesn't cut it.

blah blah blah mind body dualism blah blah blah biopsychosocial blah blah blah stress blah blah blah CBT works blah blah

(blahs added for emphasis for how bored I am at seeing this superficial argument being trotted out).

The statements from these sorts of people are always the same and always lacking in substance.

I mean there is no scientific evidence that aliens do not exist! Ergo

(apologies for not really adding anything of substance to this thread)

 

Is there a problem with the translation or has the word "head" been used, where "mind" might have been expected? The idea of separation of head and body is an interesting one A metaphor too far perhaps.

 

It's a literal translation by google. In my country we talk about no separation between "head and body", meaning "mind and body". And I agree it sounds a bit silly as necks are rather common.

 

I find this section painful to read because it suggests severely ill patients have a choice in this. The severely ill ME-patients I know were forced to do this because of their illness, so it wasn't really a healthcare decision.

 

I completely agree with you. I've been bed bound myself for periods of time, but always because there was no other choice. The second I improved and didn't have to stay in bed, I was up and about again immediately - no motivation or CBT needed.

 

the ME Association's user survey is interesting, but in a scientific context, randomized controlled trials rank significantly higher, and these studies show no serious side effects of either cognitive therapy or Lightning Process . So both are safe.

What are we to make of this section of Landmark's contribution. Surely the RCT in relation to Lightning Process now contains a caution. I was watching DT's latest video from Oxford only yesterday. Is this misleading?

 

There's no medical evidence that lying down in a darkened, quiet room will help, but plenty of anecdotal evidence. Just as there is similar anecdotal evidence with migraine sufferers.

There's some medical evidence that not doing so may be harmful, but there was no evidence that smoking cigarettes was harmful until they went looking.

We certainly have evidence that people have, either by accident or design, ignored evidence of harm as in the PACE trial. @Tom Kindlon wrote an excellent paper about that. In addition an FOI by some members of S4ME discovered that many CFS clinics don't even have a mechanism of recording harms at all.

It is not acceptable to simply claim there is no health benefit, you must also be able to demonstrate there is no harm.

Edit ( twice!) clarity

 

Oh, this is good.

I don't know if it's the actual term, equal treatment, but this is actually a fundamental right guaranteed in many countries and there is no denying that on this front we are denied equal treatment, proudly in fact, since the people responsible explicitly argue we should be treated differently, none more so here than the arbitrary reclassification under the nonsensical FND umbrella.

Equal treatment would see comparable resources to MS and Parkinson's while we typically get absolutely zero. This will be the basis of most class action lawsuits in the future, as the entire point of rights it that they cannot be denied.

 

Uh, the BPS model (psychosocial actually but the bio part was added only as a rebranding exercise) and FND both have their origins in the early 20th century, and have in fact not much changed since then. They are about 90% identical to Freudian beliefs, which actually predate knowledge of germs, let alone the germ theory of disease.

When you have to make stuff up to keep making stuff up...

 

Yeah this is incredibly callous and insulting and a complete misrepresentation of reality.

 

Ah. Now I do understand and agree with what you're saying here but I see a caveat. Equal treatment compared with....?

You see, I think the BPS crew believe they are giving us equal treatment. Equal to the treatment other mental health patients get. Different standards of treatment for those with an actual disease you understand.

Don't like it? Well that's just because of fear of the stigma of mental health. And it's okay to base treatment for mental health issues on crap research because they're different. But the BPS crew don't contribute to the stigma of mental health patients at all. Oh no.

 

Comparable diseases, in terms of disability: MS, Parkinson's, RA.

BPS opinions will be irrelevant under that consideration, amounting to either criminal negligence or disqualifying incompetence, equally bad. That they are lead, and have been for decades, by opinions and beliefs is precisely the problem. Denial is not a valid justification when they believe nonsense against all evidence that it is obvious nonsense.

Only in hindsight, of course. Those people forget there will be an after, when current dogma becomes irrelevant, in fact looks blatantly monstrous and absurd. AIDS used to be a target of scorn and mockery, "serves them right" was a common attitude, and today there are annual commemorations of this massive failure and nothing but respect for it. It's hard to imagine change this massive but it's basically how it always unfolds.

 

Is the LP essentially just giving people, who have been told to isolate themselves in dark rooms without actually needing to, the permission to start doing things again? (If it's assumed that this is what patients are being adviced to do?)

I really don't think doing too little is a common problem for ME patients. There's more harmful advice about increasing activity and exercising your way to health, than there is harmful advice about restricting activity more than necessary. I haven't even met a health practitioner that tells me to rest at all, and everyone tells me to do more in one way or another.

Is it just me, or is resting (and restricting sensory input) more than you need actually extremely difficult? I don't have that kind of will power. Just resting the amount I need is difficult, and I almost always over do it, even if just by a little. I can't remember the last day I did less than I was able to.

 

Absolutely. It is not just you. I found that it takes far more self discipline to stop than it ever did to push myself.