• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Norweigan Health Directorate Recommends ICCME

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I still have personal reservations about the ICC ME but there we go - it seems the Norwegians don't and are recommending it though how this will pan-out with only other criteria being used in research at present I don't know.

One of the 'problems' will be matching like for like - old research with presumably new research and there's still the 'problem' with testing, not to mention legitimising 'ME' for those preferring 'CFS' or 'CFS/ME' as being interchangeable.

Nevertheless and all things that my lousy brain can consider - this seems a step forward in terms of the new criteria:

'http://translate.google.com/transla...r/cfs-me/diagnosekriterier/Sider/default.aspx

Diagnostic Criteria

Directorate of Health recommends that the new international diagnostic criteria for ME is used. The criteria developed by an international expert group.
In the report it is essential to a thorough medical history in which the patient can talk freely, in addition to targeted questions from the process.

Other diseases that could explain the symptom picture must be ruled by a series of laboratory tests and any other medical examination and psychological assessment.

It has been demonstrated several biomedical tracks including suggesting immunological conditions. It is also demonstrated alterations in the autonomic nervous system, regulation of temperature and blood pressure. These findings are not sufficiently consistent to that one has been able to develop a diagnostic test that characterize and limit the patient population.

Related Documents

Diagnostic Criteria: International consensus criteria for CFS (pdf, 148kb)
Short Version diagnostic criteria ME (pdf, 21KB)'

Perhaps this move was to be expected. I mean it was via a Norwegian publication that this arose in the first place and given their department of health's pronouncement/apology last year in light of the rituximab trials...

Norway don't produce much in terms of research though and whilst this decision might impact on other countries it will be interesting to see if it indeed sways future research efforts elsewhere I guess.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Treatment section whilst saying the following is actually - in my opine and now having read it - rather good actually...

'Graded exercise therapy and cognitive behavioral therapy has proven efficacy for some groups. It is shown in the Report of the Knowledge Centre No. 09-2006 that this probably means less fatigue and possibly some increase in work participation.'

'There is currently no cure and little documentation of palliative care for the patient group as a whole.

Research is conducted both nationally and internationally on the causes, mechanisms and effective treatment of CFS / ME, but without that so far have obtained clear answers to all in the patient group. Therefore, coping, symptom management and custom activities is important.

The different stages of the disease may require different treatment approaches. For example, the custom activity to be a good measure for some of the mild and moderate phase while it is not relevant to those in severe / very severe stage. Graded exercise therapy and cognitive behavioral therapy has proven efficacy for some groups. It is shown in the Report of the Knowledge Centre No. 09-2006 that this probably means less fatigue and possibly some increase in work participation.

There are several alternative coping techniques for some give some improvement, for others experienced no effect or it is worsening. None of the alternative learning techniques have proven efficacy. Examples of such options is Qigong, acupuncture and the Lightning Process. Some of these deals are expensive and energy intensive. There is also an additional burden on anyone that they feel guilt over failing to get well after trying some of these options.

Research is underway in Norway and abroad, which in time may lead to effective treatment. It does, however, often many years to develop drugs or other measures of good NOK documentation. Those who are considering alternative or non-documented treatment should therefore consider the various offers thorough, and often consulted with her doctor, or with other people they have confidence in the public health and care services.'
 

Enid

Senior Member
Messages
3,309
Location
UK
Couln't read Firestormm but got the gist - it's personally good to see having known from their beginnings in Norway the long (well over my 12 years) battle to get the disease accepted for what it is at all levels. They've only ever accepted the best most experienced Docs/Researchers - it's paid dividends at last. But the work goes on.

It's taken 24 years of denial and crashing ignorance into which the psyches have a field day of trying to talk away what they (being simple) cannot understand.
 

Enid

Senior Member
Messages
3,309
Location
UK
Got it - thanks Firestormm - a bit surprised at the CBT/GET bit though. Useless to those about here. Still institutional medicine supports it's own means and ends.I am advised the Norwegian ME Association do not support CBT/GET.

The usual problem with "institutions" (support each other before those they serve - disgusting in medicine we've so long trusted as beyond cronyism)
 
Messages
30
As I wrote in another thread, this is a good news-bad news situation. The recommendation to use ICC is promising, but its unfortunate that the Norwegian Directorate of Health has given in to pressure regarding CBT and GET since their last recommendations were made in July. They then stated that CBT and GET could not be recommended as treatments for ME/CFS.

As mentioned above, the text now states that CBT and GET has documented effects in some groups (understood: within the ME/CFS umbrella). This change is not good news, and hopefully the hard-working Norwegian patient organizations can lobby for a change back to the more restrictive (and truthful) previous statement.

Like many European countries Norway has a strong psychosocial CBT-GET lobby and there is an ongoing struggle between this group of physicians/researchers (Vegard Bruun Wyller being the most prominent) and the biomedical school (Baumgarten-Austrheim and others). In June, with the (then) recommendations by the Directorate, we thought the biomedical school had made a huge win, now with the December recommendations it's a step backwards.

It's clear the Directorate is torn between the psychosocial lobby and the biomedical folks.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I thought it read rather well Camilla in the context of the whole page. If such a thing were included within the NICE guidelines and in such a manner over in the UK I would be far happier that it is now.

Still I do have reservations about ICC ME but it is the first clear sign that at least the Norwegians are prepared to move away from previous (less defined?) criteria. Whether this will also be the case for research I don't know - it will be interesting to find out I think.

Are we still waiting for the next phase of the ICC ME roll-out by the way - the physicians guide I think it was?
 

Artstu

Senior Member
Messages
279
Location
UK
Graded exercise therapy and cognitive behavioral therapy has proven efficacy for some groups. It is shown in the Report of the Knowledge Centre No. 09-2006 that this probably means less fatigue and possibly some increase in work participation.

It that simply their implication to give it more credibility
 

Desdinova

Senior Member
Messages
276
Location
USA
I think that the ICC ME body should come to a unanimous opinion .about GET. What GET is and is not and how it is to be implemented and by whom it is implemented. Establish a participating patients (bill of) rights. Make it clear that what many health care systems push as graded exercise is often draconian in nature and harmful to many of it's participants. Make it clear (to help dispel the notion) that GET is just (easy does it) physical therapy. Most importantly that if a patient physically collapses during or after due to PEM and is unable to physical continue with the program the patient cannot be classified as uncooperative or obstinate and having internationally quit the program. They should also address the issues with GET as well.
 

Anne

Senior Member
Messages
295
A very unfortunate letter to the editor / debate article regarding the ICC has just been published in the Norwegian medical magazine Dagens Medisin (Today's Medicine). The author is a Swedish pediatrician with no real experience or knowledge from the ME/CFS field, but with very strong opinions... See translation below (quick translation done by me, by no means perfect).


Letter to the editor of the Norwegian medical magazine Dagens Medisin (Todays Medicine)

Jan 16th, 2012

Debate:

New criteria for ME/CFS


The fact that the Norwegian Directorate of Health is recommending these new ME criteria is probably the result of successful lobbying from patient representatives who for all the world do not want to see CFS associated with somatization or psyche


Mats Reimer, pediatrician and blogger, Gothenburg, Sweden


It was with surprise I read that the Norwegian Directorate of Health will now be defining chronic fatigue syndrome (CFS) according to new international consensus criteria. They have translated the article Myalgic Encephalomyelitis: International Consensus Criteria into Norwegian.

Consensus sounds good, but this article does not represent a broad consensus among the most active in this field of research. Instead, it represents an internal consensus among those who claim that CFS is a purely neuroimmune disease, by exclusion of the researchers from the Netherlands and the UK and perhaps Oslo, too who with a certain success are working with a biopsychosocial model for the illness.

The authors are already making their standpoint clear in the title of the article, where they instead of CFS use the term myalgic encephalomyelitis, despite the fact that encephalomyelitis or myelitis has never been demonstrated. In the new criteria they have removed the requirement that symptoms must have been present for six months, and they claim that no other illnesses have criteria where there is a time requirement of six months to get a diagnosis.

This is not true. Leafing through DSM-4, one will find a number of diagnoses with a requirement for symptoms to have lasted for at least six months.

THE CRITERIA. The main criterion is, of course, a disabling fatigue which the authors label Post exertional neuroimmune exhaustion. They claim this criterion can be met despite a very average level of activity, if the person was twice energetic to begin with. An
Outstanding athlete, for example, could have a 50% reduction in his ? her pre-illness activity level and is still more active than a sedentary person.

In addition to the main criterion the a diagnosis of ME requires three neurological symptoms, three immunological / GI / urogenital symptoms and one symptom of impairment in energy production? transportation. Neurological symptoms include impaired concentration, difficulty with making decisions, short-term memory loss, unsteadiness, pain, altered sleep pattern and several other very common subjective symptoms.



IMMUNOLOGICAL SYMPTOMS. Among the immunological symptoms mentioned are sore throat, sinusitis, enlarged lymphnodes in the neck and frequent viral infections. Redness of the pharynx and the tonsil is considered as indicative of immune activation. Hypersensitivity to food, medicines, odours or chemicals may also be viewed as immunological symptoms. Nausea or bloating are examples of valid gastrointestinal symptoms, and urogenital symptoms include increased urination urinate, frequent urination and nocturia.

As symptoms of impairment in energy production? transportation the authors mention circulation problems (orthostatic intolerance, palpitations, lightheadedness / dizziness), breathing problems, temperature deviations (low body temperature, sweating episodes, feelings of feverishness without a fever, cold extremities) and finally intolerance to extreme temperatures. Who doesnt have that?

I believe almost all general practitioners have seen most of these bisymptoms in various combinations in patients who are afraid that the symptoms might be caused by disease, or who are finding these rather common problems difficult to live with. I by no means wish to minimize the CFS patients real suffering with severe fatigue - I just mean to say that most of the other symptoms required for a diagnosis of ME are completely unspecific.

UNCONVENTIONAL. The authors who have reached consensus are clinicians, researchers, and a patient. Several of them are retired, some have weird theories and use highly unconventional methods. Kenny the Meirleir from Belgium believes that CFS is often caused by dysbiosis in the gut, and uses a treatment model with antibiotics followed by probiotics. Lillestrom Health Clinic recently went bankrupt since the Norwegian Board of Health stopped such misuse of antibiotics, but it is possible that de Meirleir is still treating patients in Norway with this method.

John Chia, a specialist in infectious diseases from California, believes that enteroviruses cause CFS. He has cured his sons CFS with interferon and herbal preparations. He recommends Equilibrant, a dietary supplement with vitamins and various herbs such as liquorice, shitake fungi and olive trea leaves. The Irish professor emeritus Austin Darragh has, among many other things, invented a machine (Vi-Aqua), which is claimed to provide water electromagnetic energy to get better yields.

IN BAD COMPANY. Martin Pall, professor emeritus of biochemistry, claims to have found a new disease paradigm with a common background of chronic fatigue syndrome, tinnitus, schizophrenia, asthma, and a host of other ailments. Few researchers seem to believe in his theories.

Judy Mikovits is the most famous of the authors. Her discovery that the CFS could be caused by a virus called XMRV, received enormous attention as the results were published in Science. His career came to an abrupt end when she recently was fired and was convicted of theft from his former employer, and Science has retracted the article because XMRV proved to be an artifact.

The fact that the Norwegian Directorate of Health is recommending these new ME criteria is probably the result of successful lobbying from patient representatives who for all the world do not want to see CFS associated with somatization or psyche, and is perhaps also due to of one of the authors being Barbara Baumgarten-Austrheim, physician at the ME centre in Oslo. But with some of these authors, she is in bad company.

Chronicle and debate, current Medicine 01/2012

Mats Reimer


The article in Norwegian:
http://www.dagensmedisin.no/debatt/nye-kriterier-for-mecfs/
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Thanks for posting this Anne. I am actually surprised it has taken so long for critiques to occur. Perhaps this marks the beginning i.e. now a statutory health provider has officially recognised and chosen the ICC ME?

Since its' announcement it has hardly caused a ripple outside of patient circles. I can't recall at this precise moment anyone else talking about it let alone critiquing it.

Will take another look in the morning...
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I think that the ICC ME body should come to a unanimous opinion .about GET. What GET is and is not and how it is to be implemented and by whom it is implemented. Establish a participating patients (bill of) rights. Make it clear that what many health care systems push as graded exercise is often draconian in nature and harmful to many of it's participants. Make it clear (to help dispel the notion) that GET is just (easy does it) physical therapy. Most importantly that if a patient physically collapses during or after due to PEM and is unable to physical continue with the program the patient cannot be classified as uncooperative or obstinate and having internationally quit the program. They should also address the issues with GET as well.

Hi Desndinova, the ICC ME was not a formal organizational body, it was a collaboration for a specific purpose. A similar collaboration on the CBT/GET could be assembled by relevant specialists including psychiatrists and exercise physiologists, using the same Delphi process as was used in the ICC ME. It would not be the same group unless they decided to take it on this way.

On post 12 By Anne , I am writing a report that will attack the very basis for CBT/GET. It might be years before I finish though. I wonder what they will say about me after that? Some crackpot patient? Psychiatry is divided - those who believe psychobabble, and those who are embarassed by it. The anti-psychobabble literature appears to be on the rise, although I have not done anything like a survey this is just opinion and could be biased by what I have ben searching for. If I am right, who are the primary antagonists to psychbabble? Other psychiatrists.

Bye, Alex
 
Messages
57
between those that believe that it is a nonexistent illness (maladie imaginaire); those that feel it is a psychiatric disorder; and the activists (comprising patients, doctors and even some scientists) who are convinced of a somatic disease

Wonder which one he disagrees most strongly with - "even" scientists shock horror.

This publication triggered unscientific and sometimes personal attacks on the researchers in both the scientific literatureand via the Internet.

What, all of it unscientific? Really? Or is he tarring all criticism with one brush?

Quite a bit of mediocre research has been carried out in relation to CFS.

Get you!

It makes quite a difference whether they intended for research in which case specificity is paramount (that is, do the criteria reliably identify only subjects with the disorder?).
the authors suggest that the currently accepted international diagnostic criteria, originally formulated by an expert group from several countries under the auspices of the Centers for Disease Control (CDC) [26] and subsequently modified by a further international group [33] are too broad (i.e. lack specificity) and allow patients with primary psychiatric disorders, notably major depression to be labelled with CFS/ME
Under the auspices of the CDC-convened international expert group, we previously demonstrated that chronic fatigue states regardless of exactly how they are defined, share a common and relatively stereotyped set of symptom domains
We suggest that there is little to be gained by reshaping the diagnostic criteria
continue to pursue evidenced-based treatment interventions

Pretty clear then - research criteria need to be specific but actually a whole bunch of conditions are pretty much the same anyway so just keep using Fukuda, or preferably something even vaguer like Oxford. That way we can keep showing that CBT and GET are "evidence-based"

I am not really qualified to judge the ICC myself, but I am pretty sure I will look elsewhere than this guy for my analysis of it :(
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Morning Dai,

I am inclined - having finally reformatted and been able to read the darn thing - to post on its' own thread. You make some interesting observations. Am pretty sure this is the first critique of the proposed criteria I have seen since it's publication.

Need to get my head around it I think!

Edit:

Van der Meer and Lloyd critique: http://forums.phoenixrising.me/show...-Critique-International-Consensus-Criteria-ME
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Lloyd and van der Meer seem to be confused. It is not a consensus on CFS, it is a consensus on ME.

Also,
Quite a bit of mediocre research has been carried out in relation to CFS.
Mediocre research is carried out in relation to all diseases. This is hardly a scientific criticism. The lack of findings for both CFS and ME is primarily due to a lack of research. To deny this is to accept the catch-22.