To: Annika Saarikko and Pirkko Mattila, the ministers of the Finnish Ministry of Social Affairs and Health

ME/CFS IS NOT A FUNCTIONAL DISORDER – WE CALL FOR APPROPRIATE TREATMENT

ME/CFS IS NOT A FUNCTIONAL DISORDER – WE CALL FOR APPROPRIATE TREATMENT

Suomeksi (in Finnish): https://docs.google.com/document/d/1XOvStzveP77fATk73ROtIY24kPldKOh7R_lub7c5AL8/edit?usp=sharing
På svenska (in Swedish): https://docs.google.com/document/d/1Coht2aDZg1iLcuKd47CR0Ro5NQBrBvp8MRw3tgvkb8k/edit?usp=sharing

Dear ministers Annika Saarikko and Pirkko Mattila, we call on you to initiate the planning of the treatment of ME/CFS on the basis of up-to-date scientific knowledge. The model for treating functional disorders is not appropriate for this disease.


WHAT WE CALL FOR:

Patients with ME/CFS are entitled to evidence-based treatment, and instead of organizing psychosocial treatment, we call on the Finnish social and health care to

• acknowledge ME/CFS as a physical illness and treat both patients and their families on an equal basis with patients suffering from other serious organic diseases (the Finnish equality act)

• provide its employees and medical students up-to-date, correct information (not the theory of ME/CFS as a functional disorder)

• use diagnostic criteria, that is strict enough to distinguish ME/CFS from other conditions (e.g. the Canadian Concensus Criteria[1])

• organize symptomatic treatment on the basis of up-to-date scientific definition of ME/CFS as a somatic illness

• apply biomedical, evidence-based treatments developed for ME/CFS, as soon as they are available

• guarantee ME/CFS patients the support and the specific equipments that they need to cope according to the Finnish disability service act.

Why is this important?

PROBLEMS IN THE PROPOSED MODEL

ME/CFS (G93.3) is also known as postviral fatigue syndrome, myalgic encephalomyelitis and chronic fatigue syndrome, and the WHO has listed it as a disease of the nervous system since 1969. Although the cause of the disease is still unknown, the biomedical research has shown explicitly that the disease is organic[2][3][4]. The STM (Finnish Ministry of Social Affairs and Health) working group for organizing the treatment of functional disorders, however, defines it as a psychosocial condition by including it in the group of functional disorders. This kind of classification leads to entirely unsuitable treatments and denying patients with ME/CFS the support that they need.

The model of classifying ME/CFS as a functional disorder comes from Denmark. The leading ME/CFS researchers[5] in the international science community consider this model as oppositional to contemporary scientific knowledge and harmful. The experts of WorkWell Foundation[6], who specialize in the hallmark symptom of ME/CFS (PEM), released last May (2018) a concerned letter addressed to all healthcare providers, in which they warned about the harmfulness of graded ex-ercise therapy (GET)[7]. The unravelling of avoidance behavior, which has been proposed for treating functional disorders, blatantly conflicts the recommendations of these experts.

The results of a study known as The PACE Trial[8] have been presented as scientific basis for the psychosocial treatment of ME/CFS. The study, however, has been profoundly questioned due to serious methodological problems[9]. Three open letters have been sent to The Lancet demanding an independent reanalysis of the trial data. The first letter was signed by six international scientists on the field, and the second one by 42 of them[10][11]. The third letter was ultimately signed by more than a hundred[12]. A few other studies have been presented as basis for psychosocial treatment as well and they too have silmilar problems[13][14].


THE CURRENT SITUATION

Even though the STM report hasn’t yet been released, medical and psychology students of the University of Helsinki have already been lectured about chronic fatigue syndrome under the title “Functional disorders” in the past two years[15][16], and similar lectures have been provided for the medical profession throughout Finland. The Finnish social insurance institution Kela has already been applying the treatment model for functional disorders to patients with ME/CFS and rejected ME/CFS-based applications for social benefits because of the misrepresentation of the illness. There is a significant number of disabled people with ME/CFS in Finland, who have no social security. Those of them, who have no personal safety nets, are the most vulnerable. The guidance for schooling in the STM report, that concerns children with ME/CFS[17], goes against articles 17§ and 18§ of the Finnish primary education act. As for children with ME/CFS, classifying the illness as a psychosocial disorder has caused Finnish families with children unreasonable suffering and difficulty[18].

SIGN

By signing this petition you help Finnish patients with ME/CFS to get the care and support that they need and to which they are legally entitled.

REFERENCE LIST:
https://docs.google.com/document/d/1RcKjJEW2MR81L8OFE4dDey4T2aaJbKJ6voqyNTeXA9M/edit?usp=sharing


Reasons for signing

  • I have been ill since January 1989. My life has been completely destroyed by this disease. I live in isolation and poverty and what may become homelessness for me. This is a devastating life altering brain disease!! Why won't you help us?!!
  • This is so important to ignore.
  • This is important

Updates

2018-12-04 15:56:38 -0500

THE DELIVERY OF THE PETITION

We asked the ministers’ secretaries several times to make an appointment for delivering the petition in person. We waited for an answer for more than three weeks. Meanwhile the STM working group’s report on how to arrange the treatment of CFS became ready to be published. In our view, we had no more time to wait without even knowing, whether we would be granted an audience or not. Therefore we delivered the petition along with a cover letter via email on Sunday the 2nd of December. A copy was also sent to the Finnish ME/CFS associations, The Finnish Association of People with Physical Disabilities, the members of the Finnish Parliament, National Institute of Health and Welfare, Finnish Institute of Occupational Health, The Social Insurance Institution of Finland, Council for Choices in Health Care in Finland (COHERE Finland) and the Finnish media.

The petition can be signed until we get a response from the ministers.

2018-12-04 15:53:18 -0500

VETOOMUKSEN LUOVUTUS

Pyysimme useaan kertaan ministereiden sihteereitä varaamaan ajan vetoomuksen luovuttamiseksi ministereille kädestä käteen. Vastaus viipyi neljättä viikkoa. Tänä aikana STM:n CFS:n hoidon järjestämistä suunnitelleen työryhmän esitys saatettiin julkaisuvalmiiksi. Katsoimme, ettei meillä ollut enää aikaa odottaa tietämättä edes, tulisimmeko saamaan audienssia. Niinpä luovutimme vetoomuksen saatekirjeineen sunnuntai-iltana 2. joulukuuta sähköpostitse. Kopio lähetettiin tiedoksi myös suomalaisille ME/CFS-yhdistyksille, Invalidiliittoon, kansanedustajille, THL:lle, TTL:lle, KELAan, PALKOon ja medialle.

Vetoomuksen voi allekirjoittaa aina siihen asti, kunnes saamme ministereiltä vastauksen.

MEDIA COVERAGE / ASIASTA MEDIASSA / MEDIETÄCKNING

http://turpaduunari.fi/ministerit-eivat-ota-vastaan-me-cfs-delegaatiota/?fbclid=IwAR3gn80Jz4bYD4UdEuOojjdMJ2agQLK6GlZLCFeObIYGPqcbsm2m6tThay0

2018-12-04 15:52:55 -0500

ÖVERLÄMNANDE AV UPPROPET

Vi bad ministrarnas sekreterare upprepade gånger om att avtala en tidpunkt för att överlämna uppropet personligen. Beskedet har låtit vänta på sig i mer än tre veckor och under tiden har STM:s arbetsgrupps rapport hunnit bli färdig och väntar på publikation. Vi ansåg oss inte ha tid att vänta längre på svar på huruvida audiens alls skulle beviljas. Därför överlämnades uppropet via e-mail söndagen den 2 december 2018 tillsammans med ett följebrev. En kopia av mejlet sändes till de finländska ME/CFS föreningarna, Invalidförbundet, ledamöterna vid Finlands riksdag, Institutet för hälsa och välfärd, Arbetshälsoinstitutet, Försäkringspensionsanstalten, Tjänsteutbudet inom hälso- och sjukvården samt till media.

MEDIA COVERAGE / ASIASTA MEDIASSA / MEDIETÄCKNING

http://turpaduunari.fi/ministerit-eivat-ota-vastaan-me-cfs-delegaatiota/?fbclid=IwAR3gn80Jz4bYD4UdEuOojjdMJ2agQLK6GlZLCFeObIYGPqcbsm2m6tThay0

2018-10-23 07:20:43 -0400

1,000 signatures reached

2018-10-22 16:37:58 -0400

500 signatures reached

2018-10-22 09:53:10 -0400

100 signatures reached

2018-10-22 05:51:37 -0400

50 signatures reached

2018-10-22 04:06:50 -0400

25 signatures reached

2018-10-22 03:49:16 -0400

10 signatures reached