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1. A biopsychosocial Long Covid symposium in Finland, with speakers including Sharpe, Garner and Kvale 
2. ME/CFS and Long Covid patients should not be treated based on FND methods 

ME/CFS and Long Covid patients’ treatment in Finland

In Finland, the treatment of ME/CFS patients is organised mainly in the HUS Outpatient Clinic for Functional Disorders and Long Covid patients mainly in the HUS Outpatient Clinic for Long-Term Effects of COVID-19.

Both outpatient clinics use treatment methods tailored for functional disorders as part of treatment and rehabilitation of ME/CFS and Long Covid patients.

Methods are varied but they are based on the assumption that patients’ symptoms are partly or entirely caused by deconditioning, avoidance behaviour related to physical activity or misconceptions about the disease.  

At the Outpatient Clinic for Long-Term Effercts of COVID-19, Long Covid patients are referred to self-care programs such as the HUS online therapy designed for functional disorders called ”Rehabilitation program for long-term and debilitating physical symptoms”.

The program is described on the HUS website as suitable for patients who are ready to review and modify their patterns of behaviour and thinking related to symptoms in order to improve their quality of life and functioning.

In addition, the website informs that the interpretation that symptoms are caused by a specific serious illness that has simply not been diagnosed can lead to increased amounts of stress and inflammation in the body and withdrawal from meaningful activities, which in turn reduces physical functioning and strengthens the perception that symptoms are harmful and that the patient is not able to perform their own activities.

Patients are also directed to the Recovery Norway website for self-care support. The Gupta program is used as part of a clinical trial. Read more on David Tuller’s blog. At the Outpatient Clinic for Functional Disorders ME/CFS patients are referred to same HUS online therapy as Long Covid patients and in addition given a booklet When the Body says stop. Information about functional disorders.  

Markku Sainio, the Chief Physician of the HUS Outpatient clinic for funtional disorders and Helena Liira, the Chief Physician of the HUS Long Covid outpatient clinic both share the view that ME/CFS and Long Covid are mostly functional neurological disorders and should be treated as such.

They have also organised seminars on ME/CFS and Long Covid to support this point of view and given statements to the media presenting these conditions mostly as functional disorders.

The EU has also awarded a 6.55 million EUR funding to a HUS-led consortium to examine the mechanisms behind the long-term effects of a COVID-19 infection. The objective is also to create a decision support system for prediction and management of Long Covid.

A biopsychosocial Long Covid symposium in Finland, with speakers including Sharpe, Garner and Kvale 

A free international symposium ”Navigating the Unknown: Exploring Realities and Best Practices for Long Covid” will take place on 16th March at Helsinki University Hospital (HUS), 12 to 16:15 PM EET (also remote).

Link to the seminar 

The symposium will focus on the biopsychosocial aspects of Long Covid. ME/CFS will also be discussed in the symposium.

The speakers for the treatment and rehabilitation part and the opener of the symposium exclusively represent the perspective of functional neurological disorders (Sainio, Sharpe, Garner, Kvale, Liira).

This is not in line with international guidelines or scientific consensus and jeopardises the treatment and rehabilitation of Long Covid and ME/CFS patients in Finland. Read more on David Tuller’s blog. 

Professor Michael Sharpe was a principal investigator for the PACE trial that investigated the use of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for ME/CFS.

The PACE trial has been found to have serious methodological problems. Professor Sharpe continues to defend the study and therapies, despite the National Institute for Health and Care Excellence (NICE) grading the findings as low and very low quality and recommending against the use of GET for people with ME/CFS due to evidence of harm.

The title of his lecture ”Biopsychosocial framework in management of LC” implies that the perspective of the lecture does not represent the guidelines.  

Professor Paul Garner’s controversial recovery from Long Covid led him to be a Recovery Norway / Lightning process promoter. He has been on TV and radio shows and written about ME/CFS, repeatedly implying that his personal experience is evidence that others should be able to recover through the same routes, if only they tried. The title of his lecture “How to recover from Long Covid” implies he will use this platform to promote opinion over science. 

The symposium will also include a lecture by Norwegian psychologist Professor Gerd Kvale. Professor Kvale and his colleagues have developed a three-day rehabilitation programme for Long Covid.

The aim is understanding and acceptance of health challenges combined with techniques to increase resilience and activity. Particular emphasis is placed on recognising and helping to break behavioural patterns that can perpetuate symptoms.  

ME/CFS and Long Covid patients should not be treated based on FND methods 

According to international scientific consensus, ICD classification and numerous guidelines, Long Covid and ME/CFS are physical, multisystemic, long-term diseases that significantly limit patients’ ability to perform activities of daily living, not functional neurological disorders (FND) or psychiatric illnesses. There is no known cure for either disease. 

For decades, attempts have been made to treat and rehabilitate people with ME/CFS on the assumption that it is a functional neurological disorder, with poor results. In some patients this has even led to a permanent worsening of the disease. 

There is no scientific evidence that the methods developed for functional neurological disorders benefit ME/CFS or Long Covid patients. These methods may even be harmful for the patients.

None of the Long Covid or ME/CFS guidelines recommend the use of FND treatment methods. More than 30 guidelines have already been published. Therefore these diseases should not be treated as such. The diagnosis, treatment and rehabilitation should follow national and international guidelines. 

The NICE guideline on ME/CFS prohibits the use of functional neurological disorder methods and methods based on the assumption that patients’ symptoms are caused by deconditioning, avoidance behaviour related to physical activity or misconceptions about the disease. No treatment should be offered as a cure.

In addition, the provision of Lightning Process or similar programs, graded exercise therapy (GET) or similar exercise methods, exercise programmes designed for other patient groups or healthy people and cognitive behavioural therapy (CBT) as a curative treatment, are explicitly prohibited. 

It should also be ensured that physicians and other healthcare professionals in Finland receive education by university hospitals only based on guidelines. This will ensure that patients nationwide receive the care and support services they need in accordance with guidelines and that the patients are not exposed to treatment that is not based on guidelines which, in the worst case, causes undue human suffering and even permanent harm.  

Why are Long Covid and ME/CFS patients treated based on FND methods in Finland, even though guidelines and international scientific consensus agree that neither disease is a functional neurological disorder? 

Will the HUS symposium contribute to the understanding of post-viral diseases as they really are: debilitating physical, multisystemic, long-term diseases that significantly limit patients’ quality of life and functional capacity? 

Is this really the knowledge that will finally give patients the care and equal access to the healthcare they need?

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