The matter in summary: • Many people wonder if there is a connection between ME and long covid, and how the health authorities handle this. • Heidi S. Økland, who has had ME since 2017, points out that many people with ME and long covid experience a deterioration in their health after a stay in rehabilitation. • The Norwegian Covid Association emphasizes that one should not equate long covid with ME, but rather see ME as one of the serious sequelae that can be caused by the virus. • Secretary General of the ME Association, Olav Osland, believes that more money must be allocated for research in the area. • Assistant Director of Health Espen Nakstad says that the Directorate of Health is working to highlight the need for more research and knowledge in the field. • State Secretary Ole Henrik Krat Bjørkholt in the Ministry of Health and Care says that they have strengthened the GPs’ basic allowance and that ME and chronic covid patients will be among those who are given priority. The summary is made by an AI service from OpenAi. The content is quality assured by news’s journalists before publication. Heidi S. Økland from Krokstadelva has had ME since 2017 after an infection. In 2018/2019, she was on the road to recovery and studying to become a speech therapist. – In March 2020, in the last semester of the master’s, my partner and I got corona, she says. Økland barely made it through the course. In autumn 2020, she started work as a speech therapist. – But the infection was still there, and I had constant breakouts. After about half a year, I had to register sick 100 per cent. Only then did I understand that I had ME and was diagnosed for it. Økland was one of many who submitted questions when news gathered an expert panel to answer readers about the coronavirus and long covid. Over 300 questions entered. The expert panel did not manage to answer all of them. Many readers wondered about a possible connection between ME and long covid, and how the health authorities handle this. Nearly four years after it was first discovered in Wuhan, China, the coronavirus still poses a serious health threat. Although the virus is no longer as deadly, many people are still on long-term sick leave as a result of exhaustion after being infected. We have sent the questions to Assistant Director of Health Espen Nakstad, and to the Ministry of Health and Care. You can read the answers from them at the bottom of the case. – Deterioration of health after rehabilitation Økland points out that a deterioration after a stay in rehabilitation is well known among people with ME. – Now the same thing is happening again with people who get long covid. Surely it shouldn’t be the case that health care or other measures should lead to a deterioration in someone’s health? she asks. According to a report, many people with ME and conditions such as chronic covid experience a deterioration in their health after a stay in rehabilitation. – We have new research that supports this from FAFO and Sintef, emphasizes Økland. She has this message for the assistant director of health: – Espen Nakstad, you say “we know so little”, but that is not true. If you see the parallels to ME, we know a lot! – Insufficient research on ME and chronic covid Furthermore, Økland is calling for better competence among GPs. She believes they should be “equipped to catch and follow up patients with post-infectious conditions”. – What is the plan for this? Nakstad says we know almost nothing about what long covid is and what helps. I think this is completely wrong. There is a lot of knowledge and experience – but it is not used to a sufficient extent. Presumably because research is lacking in Norway and internationally, says Økland. Will not equate long covid with ME – There is a not insignificant proportion of those with late sequelae who get ME, and it is a very serious condition for those who are affected, says Lillann Kvalheim Bue, deputy chairman of the Norwegian Covid Association. Lillann Kvalheim Bue is deputy chair of the Norwegian Covid Association. Photo: Norwegian Covid-19 Association – A fairly large proportion of our patient group gets exertional symptom exacerbation (PEM), which is considered the cardinal symptom of ME, continues Bue. Norwegian Covid-19 Association This is what the Norwegian Covid-19 Association replied about possible connections between long covid and ME: If a doctor has decided in advance that you have had something similar to ME, if you have become ill for a long time from covid-19, there may be a risk that other conditions are ignored. We have members who have developed, among other things, asthma, epilepsy, diabetes, pericarditis, thyroiditis and angina. At the same time, we see that ME is perhaps one of the most stigmatized and neglected disorders under the long covid umbrella. Among the few good things that will come out of covid-19 in this world, we hope one of them will be increased understanding of the ME disease, and a better offer for all ME patients. The association emphasizes that long covid should not be equated with ME, but rather see ME as one of the serious sequelae that can be caused by the virus. Wants more money for research The ME association has over 6,000 members. Secretary General of the ME Association, Olav Osland. Photo: TOM INGEBRIGTSEN / news Secretary General Olav Osland says they often receive inquiries about the link between ME and long covid. – We can only ask people to contact their GP. Regardless of whether it is ME or long covid, those affected should get an answer. That is why more money must be allocated to research, Osland believes. – May be related to infections Assistant director of health Espen Nakstad tells news that the Norwegian Directorate of Health is working to highlight the need for more research and knowledge in the field. Espen Nakstad, assistant director of health. Photo: ISMAIL BURAK AKKAN / news He refers to the Ministry of Health and Welfare when it comes to questions about the allocation of research funds. When asked about long covid and ME, he answers the following: Nakstad’s answer to the readers This was one of the things readers wanted an answer from Nakstad about: “What distinguishes long covid from ME?” – Long covid occurs after infection with the SARS-CoV-2 coronavirus, while ME probably has several triggering causes. However, chronic fatigue is reported as a symptom in both long covid and ME. Many researchers believe that long-term exhaustion and lethargy may be related to past infections, it is well known from the past that kissing disease (Epstein-Barr virus infection) can trigger such ailments. “What could be the consequences of long covid for those of us who already have fatigue disease/ME? – Hopefully, more research into long covid will help to better understand post-infectious fatigue syndromes. Part of the explanation probably lies in how the immune system reacts to infections, and in some people it is seen that immunological processes are affected for a long time after the infection itself has taken hold. Why this happens biologically must be better understood in order to be able to offer prevention, treatment and follow-up that work. “Will this worsen the condition we already have, and are we therefore at greater risk than others?” – As far as I know, there is no certain knowledge about why some people get long-term pain and others don’t. It is also not known whether people who have undergone post-infectious fatigue are more predisposed to get it again with other types of infections. Will work for better management at GP offices – It is a goal that GPs should be able to prioritize residents with major needs to a greater extent than today, replies State Secretary Ole Henrik Krat Bjørkholt (Ap) in the Ministry of Health and Care. State Secretary Ole Henrik Krat Bjørkholt says ME and chronic covid patients will be prioritized. Photo: Esten Borgos A greater degree of collaboration around the patients, more time for quality work for the health personnel and better management of the GP’s offices are appropriate measures to achieve this, he points out. – That is why we have strengthened the GPs’ basic subsidy by 730 million and made it patient-friendly. The patient group that news refers to will be among those that will be prioritized in this context, confirms Bjørkholt. The Ministry of Health and Care on allocations The Government’s goals for the GP service are breadth and quality in the service offering, sufficient capacity, professional community around the patients, and room for action and trust that the municipalities lead the services based on their needs. Since taking office, the government has, among other things, increased the allocations to the GP scheme by over NOK 1 billion and invested in recruitment. In order to achieve the objectives, additional measures are needed. Changes are therefore now being considered in, among other things, the organization and financing of the GP scheme. The Ministry of Health and Care annually earmarks research funds for both the regional health organizations and the Research Council. Norway also participates in the world’s largest research and innovation programme, Horizon Europe, where health has a high priority, researchers are encouraged to also apply for funding from this. (Source: Ministry of Health and Care) When asked whether more money will be allocated for research into ME and chronic covid, the State Secretary replies that the Ministry of Health and Care earmarks research funds for the Research Council and the health regions every year. The funds are announced. – For several years, the ministry has given guidance to the Research Council that research related to ME should be prioritised. It is important that researchers search when these funds are announced so that we gain more knowledge about the causes and treatment of ME, and more knowledge about the connections between, for example, ME and chronic covid, says Bjørkholt.
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ME and chronic covid sufferer Heidi confronted Nakstad – news Oslo and Viken – Local news, TV and radio
