The Norwegian ME Association's report on severe ME

mango said:
I've only read the summary so far, but it looks amazing.
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Agree. This looks great. Admittedly I've only managed to read the summary and the list of contents, and scrolled through bits of the rest, and won't be able to read it all: 224 pages! But it really does look like they've done a thorough - and thoroughly good - job of it.

Once concern I have - and this is in no way a criticism of the report - is what standing will this report have with the authorities and with health and disability professionals, given the fact that all too frequently whatever we say is simply ignored or not believed? So why would they take any more notice of what patients and carers are saying in this report?

I really hope I'm being much too cynical and that the report will make a substantial difference.
mango said:
As far as I know there's no English translation as of now. It doesn't say anything on the webpage nor in the report about whether they are planning on publishing an English version or not.
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Could a translation be suggested to them? There seems to be a lot of interest.
 
At the moment just skimmed through the report. Looks like great thorough work. And yes, the validity of such report will surely be questioned by many health professionals. So be it. This should spur discussion, and one cannot argue that the situation is acceptable, quite the contrary.

There are so many telling comments of the way patients in general are treated. Really horrific. And when just about 65-70% shy away from doctors (I’m one of them), it really says it all. And my doctor is not that bad! Was horrible in the initial phase, mostly cause of no/little knowledge. That had severe consequences. But who’s to blame? I find it hard to blame a doctor personally (though many absolutely can improve much by quite small measures and letting go of bad attitudes), but the knowledge problem is more of a systematic problem.

But the GP have never and to this day, can’t really help in any meaningful way, except from “producing” necessary documents. But when done with that, the hard facts is that I don’t need my GP ME-wise.

The sad and “stupid” side-effect of experiencing ME and the health system) is that you get so fed up, that you don’t even bother to use the GP for anything else. Yes, that’s my own responsibility and its probably stupid, but that’s how it is at the moment. I guess any long term ME-patient, as a minimum, probably should do some regularly check-ups of the silent numbers you don’t actually notice in your everyday life. Sure many have experienced during ME-years to have previously healthy numbers go the opposite way. That may be related to age, but there are surely also direct adverse effects of living with ME. As an example: cholesterols levels. I know for a fact that it has skyrocketed from normal to high during these years. As stupid as it is, I’m postponing and postponing new tests and statins, which I’ve probably and according to 10 year risk, should have started years ago? Can only blame myself, but again, the hesitation of engaging with doctors in other aspects, is a direct result of getting to know the system as a ME patient.
 
this is a potent weapon.

it could punch through a lot of denial and propagandized
ignorance. even the charts alone TELL A STORY!

===

Ravn said:
Could a translation be suggested to them? There seems to be a lot of interest.
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if the untranslated parts are anything like the translated
parts, i think many pwme will want to send this to their
senators, mps, francis collins, the baroness, the countess,
cnn, nyt, newspapers that print lots of graphics and
factoids, local tv stations, national networks, ....

google is amazing here, but imo a professional translation
would be good for the above.

a long time ago, ESME offered to translate significant
documents. would they be interested?

===

Peter Trewhitt said:
Most people if they know anything of ME at all think only of ‘mild’ forms or of people who are able at least to get our occasionally in a wheel chair.

This is such a valuable report.
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completely agreed. the public thinks the disease is at most as you say.

that is why the focus at this end shocks them enough to make
a difference, just as it did in hiv/aids.

this is the opposite of the caa/cdc uncle tom campaigns. ("faces of cfs" and "my legs are shot".)

which failed as any of us would have predicted had the caa
asked us. (like "faces of hiv" or "my skin is blotched".)

===

p.s. incidentally:

this is good:"better not to get help than to get help that causes extra
strain and harm".

but from a rhetorical perspective, i would change the words.
the conscienceless could interpret that as "then we do
not need to supply help".

i would change it slightly to something like "EVEN WORSE
to 'get help', because the ignorance of the disease, and the
harm of having to leave the house, causes EVEN MORE harm,
including permanent harm".
 
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We are planning an English version of the report. We have not decided whether it will be the full report or a summary of the findings.

We who have worked on the report are quite tired right now - I am an ME patient myself - but we will get round to it - and sooner rather than later. I am looking into prices for a professional translation right now.

In the meantime I would appreciate if anyone wanting to translate bits of it or using graphs would get in touch with me first, so I can check if the translation gets the meaning across.

The most important thing for me is that the report is read and used - so I am not going to be difficult :)

Trude Schei - lead author of the report, assistant secretary general, Norwegian ME Association.
 
trudeschei said:
In the meantime I would appreciate if anyone wanting to translate bits of it or using graphs would get in touch with me first, so I can check if the translation gets the meaning across.
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Wonderful to hear that you are planning an English translation!

Yes, you are totally right. I should have asked you before sharing the Google translated content here. I'm so sorry. I can delete all of it, if you'd like? Or you could report the posts you want removed, ask the moderators to delete them.
 
Ravn said:
Agree. This looks great. Admittedly I've only managed to read the summary and the list of contents, and scrolled through bits of the rest, and won't be able to read it all: 224 pages! But it really does look like they've done a thorough - and thoroughly good - job of it.

Once concern I have - and this is in no way a criticism of the report - is what standing will this report have with the authorities and with health and disability professionals, given the fact that all too frequently whatever we say is simply ignored or not believed? So why would they take any more notice of what patients and carers are saying in this report?

I really hope I'm being much too cynical and that the report will make a substantial difference.

Could a translation be suggested to them? There seems to be a lot of interest.
Click to expand...


Actually, my impression is that making these reports - the ME association have done others as well - really have been one of the most impactfull things the association have done. Even here in our rather hostile debate-climate.

Some still do try and underscore the importance of them, yes. But referencing them changes the impact of debate articles, and I'm sure also in contact with health authorities, to have such solid reports and concrete numbers to refer to. It's slowly changing the public discussion from 'our impression is' and other wage statements, that is all you have without data.

The quality of the reports have much to do with this, and I'm grateful for the work @trudeschei and others have put into this :)
 
i just want to add that this report could in principle launch the movement we need to launch. many of the attacks on our population only have significant force when these facts are kept hidden.

i published the following in 2011 (probably written earlier) and i think it relevantly summarizes why: https://thekafkapandemic.blogspot.com/2011/06/severity.html

we now have a good number of reporters and scientists who are following our story. this report looks to be what they need. @dave30th, do you think you will follow this when it is translated?

that could help shift us from begging for a respite from the attack and being denied, to demanding human rights as a population and getting them.
 
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Michiel Tack said:
These people seem barely alive. Horrible.

Am I correct that there were 586 patients in the study of which :
  • 95 patients had moderate-severe ME.
  • 444 patients had severe ME.
  • 47 patients had very severe ME.
    • of which 9 who had extremely severe ME.
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I hope you do mot mind me commenting on your comment but it sounds like this for you is new information or a revelation?

If I can just move to the general awareness and education of ME it’s the full spectrum including the potential depth to sink to, that must be emphasised everywhere, in teaching manuals at conferences etc. It shouldn’t be that the most invisible are further invisibalised by a narrative that often stops at “some are even bedridden “ because it’s not doing justice to the reality of the most severe, it’s hiding the real risks regarding management of those above that level who’s “fear of activity” is psychologised rather than understood and it should inform research and guide how seriously the illness is taken.

I recall Olav Mella saying some of his inPatients with ME were like his cancer patients a few days before death. If we could get this information widely recognised then it would also help, Surely, defeat the BPS fatigue narratives. I said to AFME that the CMRC conferences should briefly feature footage or media of the most severe to hit home the “this is not just fatigue” message to UK health professionals.
 
The report made it to a mainstream online newspaper, not the most read unfortunately, but still. Article seems very factual, cites much from the report. Good comments by Schei and Myklebust from the ME association.


"New report on ME: Among the sickest in Norway and do not get enough medical help"

[norwegian - google english]

"The sickest are so ill that if it was another disease one would think they were dying, but they live that way, year after year - without being able to move, without being able to communicate, with great pain ," says Trude Schei, who is the Assistant Secretary General of the ME Association and one of the report's authors, to ABC News.
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inox said:
The report made it to a mainstream online newspaper, not the most read unfortunately, but still. Article seems very factual, cites much from the report. Good comments by Schei and Myklebust from the ME association.


"New report on ME: Among the sickest in Norway and do not get enough medical help"

[norwegian - google english]
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Yet another article about the report from the same news site, ABC Nyheter

This time with interviews with prof. Ola D. Saugstad and senior doctor Hanne Thürmer, both confirming the grave situation for severe ME patients.

Ny rapport om de mest alvorlig ME-syke: - De har gått for lut og kaldt vann
google translation: New report on severe ME: - They've been left out in the cold

- All other patients can be forwarded to all kinds of places - a cardiologist, cancer specialist or the like. To these patients, we can only say "yes, you are really sick, but we can't do anything for you".
She believes that knowledge is increasing, and mentions that several GPs voluntarily go on courses about ME to gain a better understanding of the disease.In addition, she believes that several municipalities are trying to support the sick to a greater extent. Still, a problem is that many people have lots of opinions about the disease, without really knowing what it is.

Thürmer tells of an impression that the healthcare sector does not take the ME association seriously, and that quarrels about the disease understanding do not help the patient group.
" It is a disease, and the patients need help ," she says.
 
Yet another great article from ABC Nyheter about the report. This is their third article. This time they have interviewed Mette Schøyen who is ME patient herself and has two children with ME. One of her daughters was among the most severe ME patients in Norway for several years.

ABC Nyheter: Ny rapport om ME: Mette og hennes to barn har ME: - Du jobber i mørket og må være varsom
google translation: New report on ME: Mette and her two children have ME: - You work in the dark and have to be careful

The hospital thought there were symptom developing behaviour from relatives at home. It is so random which healthcare worker you get - some are very provoked by such a sick patient who does not get better.

It's pretty bad when for example you have a 12-year-old as a patient who lies at home - and relatives just try to be invisible.From experience, they do not dare to contact helpers, for fear of coercion, child welfare, application of "treatment" that exacerbates the illness, but which parents are instructed to in order to avoid threats of child welfare and care takeovers.

Many people experience so serious incidents as a result of receiving professional help, that they rather try to avoid it, and Schøyen as well thought it was a challenging balancing act.

- I balanced on an edge, Schøyen remembers, a constant struggle between pushing to get her daughter the help she needed, but not hard enough to potentially end up in trouble herself.

- I was terrified of provoking. A relative of a very sick, young girl called it "abuse in the name of care" after meetings with the health care service.
 
lansbergen said:
"Many free-text responses emphasize that it is better not to get help than to get help that causes extra strain and harm for the sick."

Very sad but true
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I'm only moderate and this can be true for me. Which is why I rarely to go to the doctor (once a year to cardiologist to get refills of my prescription meds, and a bit less often to my primary care physician).

I can't even imagine how horrible it must be to spend so much precious energy to see a doctor and get a recommendation to do something like GET that will make you feel worse. :nailbiting::cry:
 
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Cinders66 said:
I hope you do mot mind me commenting on your comment but it sounds like this for you is new information or a revelation?

If I can just move to the general awareness and education of ME it’s the full spectrum including the potential depth to sink to, that must be emphasised everywhere, in teaching manuals at conferences etc. It shouldn’t be that the most invisible are further invisibalised by a narrative that often stops at “some are even bedridden “ because it’s not doing justice to the reality of the most severe, it’s hiding the real risks regarding management of those above that level who’s “fear of activity” is psychologised rather than understood and it should inform research and guide how seriously the illness is taken.

I recall Olav Mella saying some of his inPatients with ME were like his cancer patients a few days before death. If we could get this information widely recognised then it would also help, Surely, defeat the BPS fatigue narratives. I said to AFME that the CMRC conferences should briefly feature footage or media of the most severe to hit home the “this is not just fatigue” message to UK health professionals.
Click to expand...
This
 

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How long have you been sick with ME?

It looks to me like 20% have been sick for 3 years or less, and about 20% have been sick 4-6 years, after that numbers get smaller.
 

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