English version (Google translate)
Etter 14 år med feil og potensielt skadelige behandlingsråd i den britiske veilederen for ME/CFS, er en ny epoke nådd. Nye NICE Guideline for ME/CFS ble publisert 29. oktober 2021.
Bakgrunn
Prosessen med den nye veilederen startet i 2017, etter USA hadde fjernet gradert trening (GET) og kognitiv adferdsterapi (CBT) som anbefalt behandling.
Utkastet ble publisert 10. november 2020 og konkluderte med det samme.
Etter å ha gjennomgått 234 ulike utfall i studier på GET og CBT, ble disse gradert til å ha svært lav og lav kvalitet:
- GET: 62 utfall – 81% svært lav, 19% lav kvalitet
- CBT: 172 utfall – 89% svært lav, 11% lav kvalitet
Les mer her: “Et historisk vendepunkt”
Utkastet var ute på høring frem til 22. desember 2020 og mottok flere tusen innspill, inkl. fra Nasjonal kompetansetjeneste for CFS/ME i Norge – som argumenterte for å beholde GET og CBT som behandling.
Planlagt publisering 21. april 2021 ble utsatt til 18. august 2021 grunnet antall innspill.
17. august 2021 ble publiseringen utsatt grunnet enkelte fagpersoner nektet å følge de nye retningslinjene.
Se reaksjoner, artikler og uttalelser her:
- 17/8/21: Reactions to the NICE Scandal
- 18/8/21 – 29/10/21: More reactions to NICE
18. oktober 2021 ble det avholdt et møte mellom NICE, ulike profesjonsforeninger og pasientforeninger.
29. oktober 2021 ble veilederen publisert:
Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management
Høydepunkt
1.1 Principles of care for people with ME/CFS
Awareness of ME/CFS and its impact
1.1.1 – Be aware that ME/CFS is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated.
1.1.2 – Recognise that people with ME/CFS may have experienced prejudice and disbelief and could feel stigmatised by people (including family, friends, health and social care professionals, and teachers) who do not understand their illness.
1.3 Advice for people with suspected ME/CFS
1.3.1 – When ME/CFS is suspected, give people personalised advice about managing their symptoms. Also advise them:
– not to use more energy than they perceive they have − they should manage their daily activity and not ‘push through’ their symptoms.
1.6 Information and support
Information about ME/CFS
1.6.4 – Explain that ME/CFS:
– can involve flare-ups and relapses even if symptoms are well managed, so planning for these should be part of the energy management plan.
1.7 Safeguarding
1.7.4 – Recognise that the following are not necessarily signs of abuse or neglect in children and young people with confirmed or suspected ME/CFS:
- physical symptoms that do not fit a commonly recognised illness pattern
- more than 1 child or family member having ME/CFS
- disagreeing with, declining or withdrawing from any part of their care and support plan, either by them or by their parents or carers on their behalf
- parents or carers acting as advocates and communicating on their behalf
- reduced or non-attendance at school.
1.11 Managing ME/CFS
1.11.1 – Be aware that ME/CFS symptoms can be managed but there is currently no cure (non-pharmacological or pharmacological) for ME/CFS.
Energy management
1.11.2 – Discuss with people with ME/CFS the principles of energy management, the potential benefits and risks and what they should expect. Explain that it:
– helps people learn to use the amount of energy they have while reducing their risk of post-exertional malaise or worsening their symptoms by exceeding their limits
Incorporating physical activity and exercise
1.11.14 – Do not offer people with ME/CFS:
– any therapy based on physical activity or exercise as a cure for ME/CFS
– physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.
1.12 Symptom management
Orthostatic intolerance
1.12.9 – Be aware that people with ME/CFS may experience orthostatic intolerance, including postural orthostatic tachycardia syndrome (POTS).
Lightning Process
1.12.27 – Do not offer the Lightning Process, or therapies based on it, to people with ME/CFS.
Cognitive behavioural therapy
1.12.28 – Box 5 – The committee wanted to highlight that cognitive behavioural therapy (CBT) has sometimes been assumed to be a cure for ME/CFS. However, it should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness.
1.16 Training for health and social care professionals
1.16.1 – Health and social care providers should ensure that all staff delivering care to people with ME/CFS receive training relevant to their role so they can provide care in line with this guideline. Training should include:
– helping them to understand what ME/CFS is and its diagnosis and management
– the experiences of people with ME/CFS.
1.17 Care for people with severe or very severe ME/CFS
Awareness of severe and very severe ME/CFS and its impact
1.17.4 – Risk assess each interaction with a person with severe or very severe ME/CFS in advance to ensure its benefits will outweigh the risks (for example, worsening their symptoms) to the person. For people with very severe ME/CFS, think about discussing this with the person’s family or carers on their behalf (if appropriate), while keeping the focus of the engagement on the person with ME/CFS.
Hva gjør Norge nå?
Det er 2 år og 8 måneder siden Helse- og omsorgsdepartementet mottok 7265 underskrifter som krevde ny ledelse ved Nasjonal kompetansetjeneste for CFS/ME, grunnet deres støtte til feil og potensielt skadelige behandlinger. Vi ble ikke hørt.
Istedenfor valgte Kompetansetjenesten, Helsedirektoratet, FHI, NAV, NTNU og UiO å støtte en studie på Lightning Process som kurativ behandling mot ME/CFS – frem til studien mistet etisk godkjenning i juni 2021.
Den norske veilederen for ME/CFS ble publisert i 2014 og oppdatert i 2015.
I mars 2021 skrev Morten Græsli, avdelingsdirektør i Helsedirektoratet, følgende i Tidsskriftet for psykologer:
Det er ikke noen automatikk i og heller ingen målsetting at vår veileder gjenspeiler den britiske. Ulike instanser og ulike land vil kunne vurdere kunnskapsgrunnlaget ulikt, vektlegge andre forhold ulikt, og potensielt komme fram til noe ulike anbefalinger.
I mai 2021 sendte Norges ME-forening et brev til Helsedirektoratet der de ber om revidering av den norske veilederen:
Vi begrunner behovet for en revisjon ut fra tre forhold: 1) En betydelig endring i forskningsmiljøet som har lagt grunnlag for at helsemyndighetene i spesielt USA og Stobritannia har radikalt revurdert sine diagnosekriterier og behandlingsråd; 2) dagens veileder er inkonsekvent i bruken av diagnosekriterier og dermed i definisjonen av relevant forskning; 3) dagens veileder oppleves som utydelig på flere områder.
Mens vi gleder oss over paradigmeskiftet i Storbritannia, øker også presset på andre lands myndigheter.
Hva gjør Norge nå?
Hilsen Sissel
Admin. for MillionsMissing Stavanger
Life with ME by Sissel 