OPEN LETTER TO RESPONSIBILITIES OF ME-SICK CHRISTIAN CARE AND CARE!
SHARE!
• Therese Bring, group manager for short-term housing at Dalheimer's house
• Viktoria Magnusson, head of social services in the district of East Gothenburg
• Ing-Marie Larsson, sector manager for Social Services in East Gothenburg
• Peter Mattisson, chair of the East Gothenburg district
board • Johan Fält, chair in Gothenburg Health and Medical
Committee • Nina Miskovsky, chair of the City of Gothenburg's Social Resource Committee
We write to you on the occasion of the articles in Göteborgs-Posten about severely ME-sick Christin. What emerges in these raises the question of what is really good and safe care and care for someone with Myalgic Encephalomyelitis (ME). Although Christine's case may seem extreme, most people with ME unfortunately have experience of meeting both ignorance and mistrust in contact with those who are to provide care and support.
.
.
ME is classified as a neurological disease. It affects many different systems in the body and is serious even in its mildest form. The most severely ill are completely bed-bound and dependent on help around the clock. As there is no cure for ME yet, the goal for both care and care is to relieve symptoms and provide a higher quality of life. The disease is characterized by the illness being exacerbated by exertion where contact with care and care also entails a risk of the disease exacerbating. Therefore, it is absolutely crucial that in the efforts to alleviate the consequences of the disease work is preventative so as not to trigger long-term or lasting symptom exacerbation.
The cardinal symptom of exertional-triggered deterioration (postexertional malaise - PEM) means that all types of stress - physical, cognitive and emotional - as well as sensory and stress can cause ME symptoms to increase as capacity shrinks. Regardless of the severity, the deterioration lasts at least 24 hours but can persist for a very long time and in some cases becomes permanent. The limit for what an ME-ill can withstand before the symptoms increase is individual, but at PEM the tolerance level for stress becomes even lower.
.
.
From the knowledge of the ME and the cardinal symptom of PEM, we can conclude:
.
.
1. Individual adaptation is absolutely necessary
Because the boundary of what triggers PEM is individual, care and care must be adapted to the person to be cared for. Routines, planning and implementation need to be designed based on the individual's needs and knowledge of ME and PEM. Listening to the sick and taking their experiences seriously is A and O!
.
.
2. PEM must be avoided at all costs
It is not possible to reduce ME symptoms by having the person biting ME and still doing or increasing the activity level, but the person needs to avoid everything that triggers PEM in order not to be impaired. This applies regardless of whether it is physical, cognitive or emotional stress, sensation or stress. Because the deterioration may be delayed, the limit often has to be drawn even before the symptoms increase. Help the sick person find ways to minimize damage!
.
.
3. The environment must take its responsibility
Those who care for and support someone with ME must be aware that their actions and treatment can also trigger PEM. Very seriously ill can even be aggravated by just having someone else in the same room. Lights, sounds, smells, movements or temperature changes that a healthy does not even reflect on can also affect. Those who are severely ill may therefore need maximum help and at the same time minimal contact with the caregiver so as not to be injured. You have to listen to what the sick person tells about his situation!
.
.
4. Energy saving is required in ALL situations and activities
The focus of care and care must be to relieve the person being cared for and thereby reduce the risk of congestion and subsequent deterioration. This can be both about the sick person using tools and strategies and about the staff's routines and planning, but the environmental design also influences. Remember that only the person with ME can decide if the adjustments made fulfill their purpose!
.
.
5. ME requires predictability along with full flexibility
A person with ME needs long foresight to be able to distribute their energy over time in a way that does not lead to overload. Life needs to be predictable and decorated. At the same time, the person needs to be able to slow down and change the plan with the effect of a moment. A difficult but absolutely necessary balancing act for both the sick person and the caregiver. Be responsive and do not blame the person unless they can carry out what was planned!
.
.
For those who have severe and very severe ME, very small and seemingly insignificant things can trigger deterioration. It is therefore crucial that people who plan and carry out care and care listen to and absorb the patient's experiences of what worsens the condition, and that they understand that their own behavior and attitudes may be part of the problem.
According to reports, the short-term resident's group manager states that Christine's wishes (eg need to rest at PEM) means that the accommodation cannot follow their routines and therefore they feel that they cannot guarantee good care and care. Therefore, Christin must move.
️ ️ We would argue that if the routines that exist are not based on knowledge of ME and the individual's needs based on their illness, it is not automatically routines that guarantee good and safe care and care. ! ️
For someone with severe ME, on the contrary, both the aforementioned routines and the planned relocation risk further deteriorating an already difficult condition and thus they pose a risk of injury. In addition, the short-term accommodation at Dalheimer's house is governed by LSS - a law that is very clear that efforts must be designed based on the individual's needs and that the business must be based on respect for the individual's right to self-determination and integrity!
.
.
On our website you can read more about Christine's situation and about ME:
https://mevardsaknas.wordpress.com/
.
.
Sources and Depth:
• CDC Expert Commentary "Chronic Fatigue Syndrome: It's Real, and We Can Do Better"
https://www.medscape.com/viewarticle/908622
• State's preparation for medical and social evaluation (SBU) Report 295/2018: "Myalgic encephalomyelitis and chronic fatigue syndrome (ME / CFS) A systematic overview"
https://www.sbu.se/…/myalgic_encephalomyelit_chronic-trott…
• Region Stockholm: "Care programs for ME / CFS - viss.nu"
http://viss.nu/.../Nervsyst.../ME-CFS-Kroniskt-trotthetssyndrom/
• Lecture by Ewa Wadhagen Wedlund, lay occupational therapist at Stora Sköndal's ME reception: "Activity and participation of people with ME / CFS - Possible non-medical measures"
https://youtu.be/qBAocrNjFlU
• Interview with pediatric neurologist Christian Sommerfelt and physician and researcher Katarina Lien: "Exercise-triggered disease exacerbation (PEM) at ME: - As a reserve tank that provides penalties after use"
https://www.abcnyheter.no/…/anstrengelsesutlost-sykdomsforv…
• Supervisor Sidsel Kreyberg: "12 basic rules at ME":
https://m.facebook.com/sidsel.kreyberg/posts/677651875651930
• Greg Crowhurst leg sjuksköterska tillsammans med Linda Crowhurst svårt ME-sjuk: "Five Important Lessons worth Learning when Caring for Someone in Severe Pain with Profound Hypersensitivities"
https://25megroup.org/carers-resources
• Swedish Parliament, Ministry of Social Affairs "Law (1993: 387) on support and service for certain disabled people"
https://www.riksdagen.se/…/lag-1993387-om-stod-och-service-…
Then STOP ENABLING QUACKERY and let's do the science thing instead where we put smart people who want to solve the problem in charge of solving the problem, with adequate funding, instead of leaving jackasses to obstruct the process.
