The Norwegian ME Association's report on severe ME

[mango]

The Norwegian ME Association has published a report about severe ME based on a survey among 586 ME-patients and 198 carers. The report has been presented to the Norwegian Directorate of Health today.

Når nøden er størst er hjelpen nærmest borte

I've only read the summary so far, but it looks amazing.

Here are a few Google translated quotes from the summary:

"A key message in the report is: The most ill ME patients are an extremely vulnerable group with minimal or no margins, where even small mistakes can lead to prolonged and severe deterioration. Help that harms is worse than no help. Anyone working with the patient needs basic knowledge about what characterizes ME, and must show respect for the patients' and relatives' experience, needs and wishes. All help services must be designed in collaboration with the patient and any relatives."

"One main message in the report is that the scope and type of care and assistance must be based on what each patient can tolerate and need, and be considered in the context of the housing situation, financial situation and help and support that the patient receives from relatives."

"The support system
The responses about the help services describes a system that fails many of the sickest ME patients. There are three main problems:

(i) insufficient assistance is offered;
(ii) the assistance provided is not adapted to the needs of the sick and leads to deterioration;
(iii) lack of knowledge and understanding of the sick person's needs and challenges at all levels.

In addition, the application process for support and aid schemes is so energy-intensive that many choose not to apply, even if they meet the requirements and are entitled to the schemes. "

"Only 1 in 3 say they feel they are believed by healthcare professionals, and only 10% of those with severe ME believe they receive adequate health care, compared to 20% of those with very severe ME. Many do not get home visits by healthcare professionals when they need it. A large proportion is de facto without health care.

About 2 out of 3 respondents have had such negative experiences with one or more health care providers that they no longer dare to contact them. 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."

"Main principles for good help
The survey asked questions about what changes the respondents would like in health care, municipal services, NAV [DWP] and other actors. Many emphasized that the help service must be based on solid knowledge of the disease. Two basic characteristics of ME must be the foundation of this:

(i) ME sufferers have an activity and stimuli intolerance. Activity and stimuli beyond the tolerance limit lead to symptom deterioration (PEM) which can be severe and last a long time. For the most severly ill people, this intolerance is extreme, and even the smallest stresses can cause severe and prolonged deterioration. For the severely ill, the assistance must be arranged with the focus that one should not under any circumstances risk harm to the patient.

(ii) The disease and symptoms fluctuate from day to day. All help services therefore require great flexibility on the patient's terms. At the same time, predictability is an important part of a good help offering, but part of the "predictability" is getting help when needed in an unpredictable situation."

"The greatest knowledge about this patient group is currently with the patients themselves and with their relatives. As a group, these patients are too ill to participate in studies, and there is little or no formal knowledge of care. All those who are to work with this group of patient must meet patients and relatives with humility towards the experiences and the expertise they possess."

"Overall, the report reveals a patient group with a serious disease, a very large - sometimes extreme - burden of disease and an extensive need for help. The situation of patients with a very severe degree of ME is in many ways shocking and often compared to dying patients. The public support system is not sufficient, and in some cases, interventions also worsen the condition. The way to a better life situation for ME sufferers is not always more help, but accurate help."

 

[mango]

From the introduction, Google translated:

"This report illustrates the situation of the sickest 25% of people with ME in Norway with regard to the burden of disease, support and the role of relatives. In the report we try to balance hard numbers and facts with thousands (literally) of free-text responses from patients and relatives who expand the picture, and are describing a very serious situation."

"This is the first systematic survey of the sickest ME patients in Norway, and describes a group of patients with very heavy disease burden and relatives living in constant crisis. The report does not come with specific recommendations on what constitutes correct support or care but presents important principles for giving correct support.

The appendix also contains a number of free-text responses with comments by the sick and people close to them, about how the support offered can be improved."

 

[theJOYdecision]

This sounds great! I’m so excited there is this information specifically about Norwegian ME warriors. Sounds like they were very blunt.
[Edit: grammar! Can I have my old brain back now please!]

 

[mango]

Editing the images in the report is probably not allowed, but they are so striking that I couldn’t help giving it a try and quickly translate at least a couple of them, just to give you a bit of an idea.

Figure 15: Disease course.




Figure 22: Percentage who have experienced that contact with one or more healthcare providers has been so difficult that they do not dare or want to contact again.

 

[Cinders66]

Looks a really useful and telling resource. Yet more good stuff from the Norwegian ME Association.the point about no margins is the hardest thing. An unavoidable hospital visit may be way outside the energy envelope, the patient is well aware of the payback and deterioration risks of going outside the margin, yet it’s unavoidable. This type of thing might well be the reason for the pretty awful trajectory reports of the very severe whereas other gradings are more able to be able to weather life’s challenges because there’s more room to accomodate them.

I wonder if this is a resource NICE would consider ?

 

[mango]

Figure 5: Functionality of the extremely severely ill (the 9 most sick patients in the study).



Sorry for the low-quality job on these translations and images. Please let me know if you find any mistakes.

 

[Colleen Steckel]

Figure 5: Functionality of the extremely severely ill (the 9 most sick patients in the study).

View attachment 7649

Sorry for the low-quality job on these translations and images. Please let me know if you find any mistakes.

I haven't compared for accuracy, but it is definitely understandable.

I think that's one of the best visuals I've seen to help understand the level of severity.

"Severe" understanding truly varies depending on what criteria a person is using. But no matter which criteria is being used, this chart cuts through the noise and truly gets the point across. "Extremely Severely Ill" - is that same a "Very Severely Ill" in the other chart?

 

[rvallee]

I've only read the summary so far, but it looks amazing.

Here are a few Google translated quotes from the summary:

"A key message in the report is: The most ill ME patients are an extremely vulnerable group with minimal or no margins, where even small mistakes can lead to prolonged and severe deterioration. Help that harms is worse than no help. Anyone working with the patient needs basic knowledge about what characterizes ME, and must show respect for the patients' and relatives' experience, needs and wishes. All help services must be designed in collaboration with the patient and any relatives."

"One main message in the report is that the scope and type of care and assistance must be based on what each patient can tolerate and need, and be considered in the context of the housing situation, financial situation and help and support that the patient receives from relatives."

"The support system
The responses about the help services describes a system that fails many of the sickest ME patients. There are three main problems:

(i) insufficient assistance is offered;
(ii) the assistance provided is not adapted to the needs of the sick and leads to deterioration;
(iii) lack of knowledge and understanding of the sick person's needs and challenges at all levels.

In addition, the application process for support and aid schemes is so energy-intensive that many choose not to apply, even if they meet the requirements and are entitled to the schemes. "

"Only 1 in 3 say they feel they are believed by healthcare professionals, and only 10% of those with severe ME believe they receive adequate health care, compared to 20% of those with very severe ME. Many do not get home visits by healthcare professionals when they need it. A large proportion is de facto without health care.

About 2 out of 3 respondents have had such negative experiences with one or more health care providers that they no longer dare to contact them. 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."

"Main principles for good help
The survey asked questions about what changes the respondents would like in health care, municipal services, NAV [DWP] and other actors. Many emphasized that the help service must be based on solid knowledge of the disease. Two basic characteristics of ME must be the foundation of this:

(i) ME sufferers have an activity and stimuli intolerance. Activity and stimuli beyond the tolerance limit lead to symptom deterioration (PEM) which can be severe and last a long time. For the most severly ill people, this intolerance is extreme, and even the smallest stresses can cause severe and prolonged deterioration. For the severely ill, the assistance must be arranged with the focus that one should not under any circumstances risk harm to the patient.

(ii) The disease and symptoms fluctuate from day to day. All help services therefore require great flexibility on the patient's terms. At the same time, predictability is an important part of a good help offering, but part of the "predictability" is getting help when needed in an unpredictable situation."

"The greatest knowledge about this patient group is currently with the patients themselves and with their relatives. As a group, these patients are too ill to participate in studies, and there is little or no formal knowledge of care. All those who are to work with this group of patient must meet patients and relatives with humility towards the experiences and the expertise they possess."

"Overall, the report reveals a patient group with a serious disease, a very large - sometimes extreme - burden of disease and an extensive need for help. The situation of patients with a very severe degree of ME is in many ways shocking and often compared to dying patients. The public support system is not sufficient, and in some cases, interventions also worsen the condition. The way to a better life situation for ME sufferers is not always more help, but accurate help."

This looks pretty fair and accurate. I guess we should expect some furious outrage from the ideological squad in the next few days? An accurate assessment such as this basically makes a solid case that they are promoting a human rights disaster, which is entirely accurate.

This clearly shows, once more, that the status quo is completely disastrous. Its proponents will no doubt be more enraged at being shown they are in the wrong than at how horrifying the reality and quality of life are for ME patients, which they clearly couldn't care less.

The most important point is that every time this is independently assessed in different countries we find the same thing. The findings are consistent, reliable and speak clearly of a catastrophic breakdown by health care institutions. Continuing with failure is as indefensible as always, but every bit of evidence that confirms what we already knew, and what advocates have pleaded for decades, strengthens the case for massive accountability. Not in a decade, or 5 years. Now.

 

[rvallee]

Figure 22: Percentage who have experienced that contact with one or more healthcare providers has been so difficult that they do not dare or want to contact again.

This directly contradicts the narrative that ME patients are heavy utilizers of health care resources. Not that it ever had any evidence but this has been my experience as well. There is often an initial heavy use of resources to make the diagnosis, which is entirely the fault of health care systems that make it harder than necessary, but once that is met there is usually a comprehension that it is hopeless to expect any help.

 

[mango]

"Extremely Severely Ill" - is that same a "Very Severely Ill" in the other chart?

No, what is translated here as "extremely severely ill" (ekstremt alvorlig syke) is not the same as "very severely ill" (svært alvorlig syke). The extremely severely ill is a subgroup from within the very severely ill group of respondents.

4.2.1 Extremely severely ill: the sickest among the very severely ill
There is a big span in degree of severity among both the very severely ill and severely ill. We have therefore separated out a group from within the group very severely ill. These are patients who got below 0% in the scale above (chapter 4.1).

4.1 [...] 0%: Strong symptoms continuously. Constantly bedridden, feeling of being seriously ill even with permanent bed rest. Strong dizziness makes it almost impossible to get piled up in bed for more than a few minutes at a time. Light and sounds are painful for eyes and ears - curtains are drawn and earplugs are needed. Strong pain almost all over the body. The skin feels very cold and is extremely sensitive to touch. Totally unable to take care of themselves. Washing and care must be done bit by bit during the day. Nausea and severe fatigue can make eating extremely difficult. Liquid food is preferred - small and often. Occasionally, tube feeding is necessary when there is no energy for chewing. Any stimulus exacerbates the experience of being seriously ill, and movements in the room should be avoided. It is almost impossible with any visitors to the room. Conversation even with family/caregiver is almost impossible. This is often misinterpreted as "selective muteness". Increased sensitivity leads to strong "adrenaline storms"; flinching and overreacting when doors are closed or doorbells etc. The sleep rhythm is often reversed.

 

[lansbergen]

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

 

[mango]

Another Google translated one (again, sorry about the low quality).

Figure 3: Functional level of people very severely ill with ME ("How often can you perform these activities?")



Edited! The heading in the previous version of the image was wrong. Should say "very severely ill".

 

[ME/CFS Skeptic]

Functionality of the extremely severely ill (the 9 most sick patients in the study).

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.

 

[mango]

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.

Yes, correct.

Rapporten er basert på svar fra i alt 586 ME-syke og 198 pårørende. Med utgangspunkt i definisjonene i Helsedirektoratets veileder og selvrapportert funksjonsnivå ble 47 pasienter klassifisert som svært alvorlig ME syk, 444 er alvorlig, mens 95 er alvorlig-moderat.

For å få fram situasjonen for de aller sykeste har vi i noen beskrivelser skilt ut en egen gruppe på 9 personer innenfor svært alvorlig som er ekstremt alvorlig syke.

 

[Peter T]

A clearer understanding of severe ME is so important.

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.

 

[Medfeb]

This looks very interesting. Would love to read the whole thing. I may have missed it but is there an English translation of the full report? Google translate doesnt deal with a file this big

 

[mango]

This looks very interesting. Would love to read the whole thing. I may have missed it but is there an English translation of the full report? Google translate doesnt deal with a file this big

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.

There are pdf splitters online where you can upload your file and divide it into several smaller pdf files for free. This one for example:
https://www.ilovepdf.com/split_pdf

 

[Medfeb]

Thanks, @mango!

 

[Hutan]

@mango, thanks very much for this. This is such a large sample; it's really valuable information.

Can you make any comment as to what proportion of the 'at least severe' ME population in Norway this report might cover? How were the people identified and contacted?

As it stands, assuming all people in the category were sampled (which of course is very unlikely), given the Norwegian population, more than 1 in 10,000 people fall into the 'at least severe ME' category.

 

[mango]

@Hutan, I only know what's in the report, so I'll add a few more quotes:

Can you make any comment as to what proportion of the 'at least severe' ME population in Norway this report might cover?

The national guidelines (the Norwegian Directorate of Health, 2015) estimates that there are between 10,000 and 20,000 people ill with ME in Norway. However, there is much that suggests that the number is higher. [see appendix 1]

If one uses the figures in the national guidelines and a proportion of 25% of ME sufferers having severe or very severe ME, one will have between 2,500 and 5,000 patients with severe or very severe ME in Norway today. This means that between 12 and 24% of these responded to our survey.

How were the people identified and contacted?

Information about the survey was disseminated via the ME Association's web pages and Facebook pages, and it was shared in relevant Facebook-based peer groups both within and outside the ME association's direction. Information was also disseminated via informal networks. The survey was open from 19.07.2018 to 01.10.2018. The survey was made in the online tool Surveymonkey.

The survey was anonymous and it is not possible to track any responses back to single respondents. A limit was placed on one response for each IP address to prevent a person responding more than once. Unfortunately, this may have created problems for families with more than one ME patient, but overall, we believe this was a proper limitation.

The requirement to be included in the study is that patients have severe or very severe degree of ME. Respondents self-reported whether they had severe or very severe ME. In addition, a number of questions were asked about the functional level. After analyzing the responses about the functional level and the definition given in the national guidelines for CFS/ME (Norwegian Directorate of Health, 2015), we made a separate grouping to get more homogeneous groups. We have used this categorization in the report.

Although the number of respondents is high, it does not necessarily mean that those who have responded are representative. It is likely that a web-based study to a lesser extent reaches the very sickest and most disadvantaged patients. Many of the findings in the report are discouraging, but it is nevertheless possible that the survey gives a somewhat overly positive impression of the situation for the most seriously ill and the size of this group. Although the survey might not be as representative as one might wish, we believe that the answers give a good indication of how the sickest ME patients and their relatives experience their situation, and what kind of help they receive or do not receive but want. There is currently very little systematic information about this patient group, and the study highlights an under-prioritized patient group.

(Edited a few spelling mistakes.)