Pardon if this has been posted before, but the Norwegian ME Association was also represented at the seminar with a lecture, a wonderful video from ME-patient Kristine (from the documentary
Perversely Dark) and a few additional words from her mother.
Here you can read the presentation with slides and see the video (in Norwegian).
From what I´ve heard the audience was very silent and concentrated during this presentation (not so much during Chalder's speech).
I also heard that there were not that many people attending the seminar, but please correct me if I'm wrong.
Here is a google-translation of the ME Association's presentation:
ME Association posts at the conference about the very sickest organized by the National expertise service for CFS / ME
These are slides and notes from a lecture by Trude Schei and Mette Schøyen a conference 4/18/16 on the most ill ME patients. The conference was organized by the National expertise service for CFS / ME.
I called Trude Schei and I am the Assistant Secretary General of the Norwegian ME Association.
It's a challenge to stand here today and speak to an audience of professionals - I'm 'only' a patient.
Though only - in my working life I was an architect, with protected professional title and letters behind my name ... and I've been involved in drawing some of the largest construction projects in Norway. In these projects stood user centrally. There were users of hospital and laboratory building that knew how to use the building, which needs they had - and who knew the body how the result was. Without listening to its users, it would be impossible to create a well-functioning building.
Now it is I myself who is using. I'm not a doctor - but I'm an expert at staying in my own body - a body that now for 17 years has had ME. I have gained me considerable experience - just like thousands of other ME patients and their relatives.
What puzzles me is how difficult it sometimes is to reach the user experience to communities. Instead of that they build it, we built patients says we need, it builds a completely different building, contrary to patients' experiences - a building of hypotheses and alleged treatment that goes across the patients try to convey that they are experiencing.
Øystein Sunde wrote once upon a time a song about that one should not "come here and come here," and this describes what many ME patients experience meet with aspects of health care: We will not "come here and come here," and believe that user experience is valuable - it is the professionals who can something, and what they say does not match what we patients experience, so it's a pity but sad.
We feel that it is a one-sided focus on fatigue, but ME is so much more, and fatigue is not even the most prominent symptom.
Of course we respect the patients that there is research that will eventually provide answers to ME riddle. It takes time to figure out this disease.
BUT ... Until research exists and one has a clear answer must communities respect and listen to patients' experiences, so they do not damage.
We see it almost as if we sit and look out over Drammensfjorden and doctors give us a map of Serbia - the map does not match the terrain where we are.
Part of the treatment advice given to ME patients do not match the patients' experiences, and some of them do harm.
To illustrate, I will show some numbers from the ME Association's user survey in 2012. Well over 1,100 patients participated, only about half of them were members of the association.
Cognitive therapy is held up as a safe and effective treatment for ME patients, the same applies to graded exercise. User experience does not match what is claimed in some institutions. Red and yellow represent users were sicker, blue represents improvement.
The numbers correspond to similar studies in other countries.
When that happens damage, it is often because they have not taken into account the phenomenon of PEM.
When we in the same survey asked patients what symptoms they experienced as most stressful, they answered not "fatigue", but "exertional symptom exacerbation - also known as PEM. Patients experience that when they make too much is the bad of it - and research has shown that they are right.
ME patients can not bear to push themselves beyond their tolerance limits, but where to draw the line individually. For the sickest may be enough to breathe and your heart beating - for me it means a walk of 20 minutes. How much is "too much" must be seen in relation to capacity. For a very sick patient can be just as bad to be asked to sit on the bed as it is for me have to run a marathon. Both would experience a dramatic deterioration.
It is good to be as active as you can tolerate - but one must not make more than one can safely tolerate. Knowledge of the PEM should underlie all approach to people with ME.
DO DAMAGE!
The phenomenon PEM is well documented.
In February 2015 published US IOM report - Beyond Chronic Fatigue and Myalgic Encephalomyelitis - Redefining an illness. The report is based on FULL research literature ME, over 9,000 articles. Recommended reading for everyone here. IOM report proposes to change the name of the disease to Systemic Exertion Intolerance Disease, and cites PEM as the most characteristic symptom. They point to a number of articles with objective findings.
Just a quick example of what happens when the relatives are not being heard.
(1) This curve will show a "typical" sykdomsforlsøp for ME. Unstable start, so stabilizing and so - as an alleged result of gradually increasing activity, sensory habituation ETC. - Gradual bedring- ME Association knows cases where health care on the basis of this curve blames parents when
(2) a sick child does not improve.
It alleges that it is the relatives that the focus on disease, that relatives are too controlling and that it hindering recovery. GP threatens to notify the child welfare system. Parents imposed measures - activation and sensory stimulation - parents know will make your child worse - and when the child GETS worse, continuing welfare, hospitals, doctor - all healthcare professionals involved - to blame the relatives and patient himself for that improvement does not happen. It could not be health personnel or their advice is wrong, can it?
I guess I do not have to describe parental despair or how traumatic this was for the baby.
ME is unpredictable! These curves show two real case histories - mine and another ME patient.
There is no research on the forecast of the sickest patients. Bells monitoring of patients showed that those who were severely / very severely ill mostly it was also 25 years after.
It's hard to describe the strains it is kin to not only see their loved ones become sicker and sicker - but also find that the institutions that are there to help rather than cause damage, giving the relatives blame.
Why do some that research shows that one can treat ME patients with cognitive therapy and graded exercise, while others refer to an objective measurable deterioration when patients committed beyond the tolerance limit?
It can at all be difficult to know whether all research on ME ME / CFS, CFS / ME, CFS SEID is on patients with the same disease.
It is used widely differing diagnostic criteria, with widely different prevalence.
Oxford criteria require only 6 months. fatigue and gives a prevalence of around 3%.
CDC or Fukudakriteriene requires exhaustion and four or more of a list additional symptoms. Studies on prevalence shows ranging from 6 per thousand to 2.6%.
Canada imposes stricter requirements for symptoms, including PEM.
Studies show that Canada criteria selects sicker patients with more and more severe symptoms, but it is only a study of prevalence - it showed 1 ppt.
Generally speaking, one can say that those who use a biopsychosocial forklaringsmodlel (and cognitive therapy and graded exercise) prefer broad diagnostic criteria, while research on medical causes of ME prefer narrow diagnostic criteria.
ME Association has worked for many years for use of narrow diagnostic criteria, and Canadian criteria are those recommended by the Directorate of Health, possibly. With Fukudakriteriene.
When one reads about in ME, it is therefore essential to know what's inclusion criteria - one can say that the diagnostic criteria is the core of the debate about ME.
I challenge anyone who speaks here today to make absolutely clear what diagnostic criteria that underlie the research they present.
Sintef report from 2011 documented the lack of knowledge at all levels of health care. There have been a small growing interest in ME ago, and there has been some positive developments, but mostly it's the same.
Today there is tremendous shortage of nursing homes adapted for ME patients, and lack of knowledge about ME on many of the nursing homes where staying ME sufferers. There is no adapted hospital places for the sickest. Anyone who has been hospitalized knows that it is sound and light around the clock, a variety of people to deal with - all major strain on the sickest.
Even worse than the lack of space is the lack of knowledge about ME. Here they use the experiences to come into its own ... But they do not.
It is in a way quite a paradox to talk on a research on the most severely ill ME patients, because there is virtually no research on these patients.
Remember that ME has diagnostic code G 93.3! ME is a separate, clearly defined disease - should not be put into a "pain and fatigue disorder of unknown cause" - sack.
Most studies on ME patients are performed on patients who are so fresh that they can visit the places where the studies take place. Man does not meet the sickest, they are too poor to have visits, can not speak, becomes sicker of all additional loads. They do not participate in studies - many families have had traumatic experiences with health care, and will not contact if they do not have to.
We do not know whether research results based on studies of patients with mild or moderate degree of ME may be transferred on the sickest patients.
My name is Mette Schøyen, and is the mother of Kristine (Video).
I am kin contact the association through 14 years, has seen many of the most severely ill, including children, and have had contact with quite a few of their relatives for a long time.
IOM report (Institute of Medicine), said ME is a serious, complex, chronic, systemic disease. In other words somatic. Some patients and their families have known for years.
Those of us who have followed the seriously ill close, seeing that ME is just this serious, frightening and dangerous. When it goes down, comes a cascade of symptoms of all body systems. The term "exhaustion", is here very little cover.
Cardinal symptom of ME is intolerance of sensory stimuli and activity beyond the individual tolerance limit, and exacerbation when limits are exceeded.
For the very sickest, this limit is already reached by only the living and survive. It is very serious to push some in this group for anything.
The idea that the imposing and expose the sick for stimulation such as light, sound, speech and activity, that this creates improvement is incorrect.
This does not meet users' own experience. It gives deterioration experienced as torture and abuse. "Abuses in childcare name" called a mother there.
Just as the idea that you "choose to add to the" perceived disrespect Kristine said, showing missing and also incorrect knowledge.
Limits of what is tolerated, it is only the sick who knows. And no one can predict how far down a worsening patient takes.
There are no studies on the most severely ill, no proven treatment. BUT THERE ARE A LOT OF USER EXPERIENCE! From the sickest themselves, close relatives, as well as clinical experience nurses and doctors who have followed the ill dense and patients' trust.
And does not map and terrain, then the map is wrong.
Terrain trumps always map.
Search as early as possible to relieve the maximum, facilitating, shield. reliever, cabinets peace and security. It creates the best possible basis for stabilization and recovery.
This can take a long time, there are no promises that this will turn, but know that for many do it.
Do not order the sick shame and responsibility if improvement is not happening! It is understandable enough, terrifying and also challenging for helpers in such a situation.
But remember then, it is not the patient who is difficult. It is the disease which is difficult; primarily for the patient!
Our GP said: I do not know anything about this disease, do not get her bedsores, pneumonia or blood clots. ME I can not no` about, then we'll just do what she says is best for her. He was our lifesaver!
"There's something weird with this disease: when the disease turns, everything starts to come back." Words from a doctor and ME patient who was totally in need of care for several years.
Increased tolerance to light, sound, conversation, moving food, comes automatically. Whether it is the result of medication or the disease turns by itself. It is very important that anyone who is sick not forced but has control yourself and get to take everything at your own pace. He needs help, it must be to hold back!
Several of you the support services, will also meet seriously ill with some major trauma resulting from past painful encounters with the support services. This knowledge is important that you have so that you can meet the patient in a gentle manner, respectful and with a large dose of empathy. You can repair what is broken, and slowly inject new confidence and trust.
Know that you are important and that Kristine said in the video, you can make a world of difference!
Thank you!
