Response from Finland's Valvira Regarding CBT and GET

In December 2017 Invest in ME Research received the following reply from Valvira concerning our letter to Valvira -

Thank you for your message. For your information, Valvira has just revised its website:

http://www.valvira.fi/-/kroonisen-vasymysoireyhtyman-hoidossa-tarvitaan-toimivaa-hoitopolkua

Valvira therefore no longer that CBT and GET should "be made available in the whole country."

That is good news that Valvira has downgraded CBT and GET and acknowledged that it is not useful for ME patients.



Response from Finland's Valvira Regarding CBT and GET

In December 2017 Invest in ME Research received the following reply from Valvira concerning our letter to Valvira -

Thank you for your message. I am sorry we haven’t replied you earlier.

However interesting your conference sounds, Valvira has unfortunately no possibility to attend it.
For your information, Valvira supervises and guides healthcare professionals and medical facilities, but Valvira does not issue recommendations on health care services.

We found this response to be unsatisfactory, especially as Valvira clearly were making recommendations on their web site.

We replied-

Thank you for the reply.

However, on your website(http://www.valvira.fi/-/kroonisen-vasymysoireyhtyman-hoidossa-tarvitaan-toimivaa-hoitopolkua) it did state -

“CFS:n hoidon linjaamisen ohella maassamme tulisi luoda potilaille toimiva, perusterveydenhuoltoon ja omalääkäriin tukeutuva hoitopolku. Hoitomuotojen, joiden tehosta on näyttöä (fyysisen harjoittelun lisääminen, kognitiivis-behavioraalinen terapia), saatavuus koko maassa tulisi varmistaa. Tällä hetkellä osa potilaista ei saa tarvitsemaansa hoitoa.”

translated to -

Treatments that have some evidence of efficacy (graded exercise therapy and cognitive behavioural therapy) should be made available in the whole country.



So Valvira are, actually, recommending these therapies as healthcare services.

Cognitive Behaviour Therapy and Graded Exercise Therapy have no evidence of efficacy that can be trusted.

Even in USA they have downgraded previous advice and neither CBT or GET are recommended.

It therefore means that Valvira is possibly negligent if it states that these therapies “should be made in the whole country” in the above statement to healthcare professionals and possibly leads Valvira open to litigation should patients suffer from the deleterious effects of these therapies.

We would ask that you to remove these statements for everyone’s benefit.

Would it be possible for you to pass on details of the Conference events in London to healthcare professionals in order that they may gain the most up-to-date information on this disease and avoid tragic mistakes being made by healthcare professionals?

Thank you again for replying,




Letter to Finland's Valvira - CBT and GET

Invest in ME Research Expresses Concern Regarding Use of CBT and GET

Valvira is Finland's National Supervisory Authority for Health and Welfare.

Recently news came that the organisation was considering wide use of CBT and GET for ME patients [1].

Valvira states that there are no diagnostic or treatment guidelines for CFS (ME) in Finland and these are needed so that patients' own GP has a care pathway to refer to.
Valvira seems to think that there is international evidence for the most effective treatment being CBT and GET and Finnish patients should have access to these therapies also.

This disturbing and potentially damaging (for patients) action was thought necessary to be challenged.

Invest in ME Research also considered it relevant to make Valvira aware of current evidence and research.

Invest in ME Research has also extended invitations to our next Colloquium and Conference.

We have sent the following letter.

We have the means to translate this into Finnish if necessary but, for now, have sent a letter in English.

References

1/ http://www.iltalehti.fi/kotimaa/201709042200370930_u0.shtml

http://www.valvira.fi/-/kroonisen-vasymysoireyhtyman-hoidossa-tarvitaan-toimivaa-hoitopolkua

2/ https://www.aamulehti.fi/uutiset/laakari-olli-polo-ei-saa-pitaa-yksityisvastaanottoaan-jatkaa-kuitenkin-ylilaakarin-virassaan-hoidot-vaaransivat-potilasturvallisuutta-200372136/


Last Update 11/09/2017

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