- 12 May 2024: International ME-day in the Community Park, Copenhagen
- Promising developments
- The ME problem in brief
- Th Mehlsen clinic
12 May 2024: International ME-day in the Community Park, Copenhagen
On the international ME day, Sunday 12th. May 2024, Millionsmissingdenmark and ME Association are planning to hold a MillionsMissing action in Fælledparken in Copenhagen! There will be an exhibition of empty shoes of ME patients and distribution of leaflets.
We need lots of volunteers to get the day through. If you are interested in participating, please join the group
12. may international ME day 2024 support group https://www.facebook.com/groups/1623805958119203. Here we can distribute the tasks.
Exact information about time and place will be posted later.
See you later!
Source: Millions Missing Denmark
Promising developments
2 months ago (November 2023-ed.), Minister of Health Sophie Løhde was called for a consultation on how to treat the disease ME (Myalgic Encephalomyelitis) in Denmark.
After the consultation, the Parliament’s Health Committee exceptionally set up a sub-committee on ME. The Health Committee wants to gain more knowledge about the disease, look at how the disease is being treated elsewhere in the world and investigate whether patients can be treated better than what is happening today.
Members of the ME-committee are: Anders Kronborg (S), Louise Brown (LA), Torsten Gejl (ALT)and Runa Friis Hansen (EL)
Alongside the work of the Health Committee, the Minister of Health has allocated DKK 1.5 million (> € 200.000, ed.) to gather knowledge and experience from abroad and to prepare updated guidelines for the investigation, treatment and care of ME patients.
The ME-committee is currently planning a closed hearing on ME within the Health Committee. The hearing is expected to be held in March or April. The committee also plans to visit ME clinics elsewhere in the world to get inspiration and learn more.
In this regard the Danish ME association was invited to a meeting with the sub-committee at Christiansborg on Tuesday 16 January. At the upcoming hearing the committee wants both presentations from a number of ME experts and reports from ordinary people. From ME patients and their relatives, who live every day with the disease and which the ME association has represented and collected knowledge from for over 20 years.
The ME problem in Denmark in brief
In Denmark the disease is being diagnosed and treated differently than in other countries, and many patients report worsening because of the treatment they receive. A worsening, which in several cases has led to severe disability and has chained patients to the bed for years.
The ME patients want to be able to visit doctors who know the disease and can quickly provide relevant help and treatment.
Also families of children and young people with ME, as well as relatives of very ill and bedridden ME patients, who are typically too sick to speak for themselves, want a clash with the old-fashioned Danish perception of ME, where one focuses on finding faults in the family instead of focus on the disease. The consequence has in many cases been forced admission or extensive suspicion of the relatives which has subsequently proved baseless.
Already in 2015 it was determined that ME is not a psychosomatic disease, but a disabling physical disease that affects many organ systems. The disease mechanism of ME is not fully mapped, but the latest research confirms, that there are basic problems with producing energy in the cells, and that damage and loss of function develop due to excessive load.
A quick and accurate diagnosis, an early effort with proper management of the disease with the knowledge we have today, can improve the prognosis and prevent patients ending up in a wheelchair or in a hospital bed.
The WHO diagnostic code for ME is largely not used in Denmark. This means that Danish ME patients can neither participate in nor benefit from research and new knowledge in the field.
Unfortunately, the majority of ME patients are not diagnosed at all. And those few have been waiting years for the diagnosis.
So there is an absolute need to get the area up to date with both training of health workers, correct diagnosis and treatment that works.
Source: fb Vibeke Ilsøe
Controversial treatment of ME patients
ME-patient and patient actvist Nina Steinkopf reacted on a controversial article published by psychiatrist Per Fink in Berlingske, an important Danish daily conservative newspaper. Unfortunately but not surprisingly Berlingske did not publish her comment.
Psychiatrist Per Fink and his colleagues at the Danish centers for Functional Disorders have published an article in Berlingske (English translation available – ed.) on February 28, 2024.
Here are my comments:
ME patients are treated radically differently in Denmark than in other parts of the world. A number of countries’ health authorities have independently concluded that ME is a chronic, multisystemic disease for which there is no cure: USA (2014, 2015, 2016), Netherlands (2018), Belgium (2020), UK (2021), USA (2023) and Germany (2023). The Danish Centers for Functional Disorders, on the other hand, headed by Per Fink, classify the disease as “functional”, i.e. psychosomatic.
Per Fink and Lene H.S. Toscano, as well as Lightning Process coach Live Landmark, have financial interests in the case. Fink’s research is funded by several insurance companies. Insurance companies benefit financially from the fact that ME is defined as psychosomatic and associate professional environments and researchers with precisely this understanding of the disease. When centers for Functional Disorders incorrectly classify ME as a functional disorder, insurance companies can reject claims from ME patients.
Redefining the disease as psychosomatic and “behavioral” can also leave “treatment” to coaches and others who believe that recovery depends on motivation and willingness to make an effort. The British health council NICE, which Fink criticizes, specifically warns against offering Landmark’s method to ME patients.
This is not the first time Fink has criticized NICE’s guidelines. NICE responded that the criticism is based on a misreading or misunderstanding of the guideline process or the guideline. “The criticism of the guideline discussed in this journal is misplaced. The guideline has been welcomed and widely accepted by patient groups and clinicians leading services for people with ME/CFS in the UK”.
The claim that “graded rehabilitation and cognitive behavioral therapy can help patients with CFS/ME and that there are no significant side effects of treatment” is incorrect. There is no research – where the cardinal symptom PEM (Post Exertional Malaise) is the inclusion criterion – that has found a positive effect of these methods. On the contrary, it has been documented that these methods can be harmful: GET and CBT are ineffective or cause harm in ME patients.
Fink states that “It is not correct” that PEM is a cardinal symptom of ME and goes on to write that “PEM is common in a wide range of diseases and has no bearing on whether the treatment works or not.” This is a logical error.
As NICE writes: “The fact that these individual symptoms are not specific to ME/CFS does not invalidate their mandatory inclusion in the diagnostic criteria. For example, fever is a mandatory feature of the American Heart Association’s diagnostic criteria for Kawasaki disease, but these criteria are not invalidated simply because fever also occurs in tonsillitis.”
More than forty studies with a two-day cycling test have objectively measured PEM in ME patients: CPET is an objective marker for PEM in ME patients.
Psychiatrist Per Fink is part of a small network of researchers actively working towards a psychosomatic understanding of the disease. Their secret, invite-only meetings are reminiscent of sectarian activity: NAV chief nurse Marit Hermansen was present at a secret ME seminar.
On March 14, 2019, the Danish Parliament decided that ME should be coded with the WHO-diagnosis code G93.3 (ICD-10), indicating that it is a disease of the nervous system, thus distinguishing it from functional disorders. It is high time that this is implemented.
The Mehlsen Clinic
The ME Association is being informed that a large number of ME patients report that, contrary to the public offers at the functional centers, they have received improvement in the symptom treatment offered at the Mehlsen Clinic in Copenhagen.
It’s nice to see and hear the big or small improvement in the degree of function and quality of life that difficult and less difficult ME patient can be helped with here.
To clarify this, patients have started a petition which everybody can sign. An English translation is available.
The clinic has over 1000 ME patients.
Source: fb ME foreningen Denmark
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