This reflection is based on my personal experiences with several patients and amplified with literature.
For the last two years, this has been the everyday view of a particular patient with myalgic encephalomyelitis (ME/CFS), also known as chronic fatigue syndrome. I can imagine, patients with longterm diseases or diseases medicine doesn’t fully understand often are left with lots of unanswered questions. What causes my pain, fever, rash etc? What does my future look like? When, if ever, will this be over? Why me? There has been lots of debates about ME/CFS the last couple of years. Looking at the increasing numbers of patients with long-term diseases, fibromyalgia, ME/CFS ect., I think this is a very important but difficult subject to discuss.
Some will think; where there’s a lack of identifiable pathology, there is no real illness. In my opinion, patients suffering from illness that cannot been pathologically explained are shown to often experience not being heard or not feel seen. They maybe got told nothing is wrong with them or to stress down a bit which can give them a feeling of disbelieve. Getting send from one place to another for years with hope that someone would believe you and find a treatment with positive effects brings lots of psychological stress as well, and it often is found resulting in reduced coping, anxiety or depression. These patients frequently experience blame and being held accountable for their own poor health. The questionmark in this photo expresses the uncertainty and helplessness from a patient point of view.
Norwegian Health Care
The health care system in Norway is publicly funded and a universal and automatic system, which means it’s affordable for all inhabitants. We have a crossparty support for universal health care coverage. This means that healthcare is a right of all people here and the government is responsible for providing us certainty by knowing that we’ll be able to access high quality healthcare regardless of age, income, gender or where we live (Lindahl, u.å).
We have clinical guidelines and evidence-based procedures for different types of diagnoses, and evidence-based results are emphasized in our healthcare system and treatments. This is off course a big dilemma for those that don’t fit the mold.
There is an ongoing debate about overdiagnosing and the use of non-evidencebased procedures, and the clinical guidelines is one of the few measures to reduce “low value” health care in Norway (Lindahl, u.å). The Directorate for Health writes: “there are at this moment no documented standard treatments that can cure CFS/ME” (Helsedirektoratet, 2015). With their guidelines they approach ME/CFS through strategies that can reduce unpleasant symptoms and contribute to coping and increased quality of life, medically but also non-medically through e.g. cognitive behavioral therapy and exercise therapy.
The ME-association in Norway, on the other hand, does not agree with their approach to ME/CFS. They only support an evidence-based biomedical approach. This starting point is based on that ME/CFS has been defined as a neurologic disease by WHO, in addition to that evidencebased documentation on positive outcome of psychosomatic treatment is qualitatively very poor (me-foreningen.info). In Norway, patients with mild or moderate ME/CFS can be offered rehabilitation and there are two different approaches; biomedical and psychosomatic (Oslo-universitetssykehus.no). These rehabilitationoffers has not been a big success for many yet and the ME-association advise against rehabilitation centres with a psychosomatic approach (Schei & Angelsen, 2018).
I think it has been, and still is, a big dilemma that the ME-association would not agree with the clinical guidelines or fond other research, since this leaves us with no answers and only with hope there will be a medical explanation for ME/CFS soon. I don’t think it’s wrong to maintain this hope, but we also need more research so ME/CFS patients do not have to be their own guineapig. But, in the meantime I think we have an important responsibility to meet these patients properly without prejudice, with a sense of understanding and genuine interest in helping them, and to promote a holistic and individualized professional treatment.
Literature:
- Lindahl, A.K. (u.å). The Norwegian Health Care System. Hentet 10.04.2019 fra: https://international.commonwealthfund.org/countries/norway/
- Helsedirektoratet (2015). Nasjonal veileder for pasienter med CFS/ME. Utredning, diagnostikk, behandling, rehabilitering, pleie og omsorg. Hentet 12.04.2019 fra: https://helsedirektoratet.no/retningslinjer/nasjonal-veileder-pasienter-med-cfsme-utredning-diagnostikk-behandling-pleie-og-omsorg
- http://www.me-foreningen.info/
- Schei, T. & Angelsen, A., 2018. Me-pasienters erfaring med rehabiliteringsopphold. Hentet 10.04.2019 fra: http://www.me-foreningen.info/wp-content/uploads/2018/08/NMEFrehabiliteringsUS-1.pdf
2 thoughts on “Benschop, Eveline. Can you see ME yet?”
Well-structured POV and essay, you create a respectful and neutral conversation platform. You also provide you own thoughts and ways in which the health care can improve.
Your picture works well with your written topic as they both resemble the questions being asked by the patients and what the health care is doing for the patients.
You made good claims which both support the Norwegian health system as well as some flaws the health system has in treating patients with ME/CFS.
You have references present, the in text referencing is not in the correct format, so maybe correct the formatting and correct the layout of your references and literature at the end of your piece as they are also not layout in the correct format as well as some information is missing.
There are also a few spelling errors, grammatically incorrect sentences and punctuation that needs to be corrected.
Overall I loved your piece as you focused on a disease that people don’t really focus on. You also provide evidence regarding the easy accessibility of the Norwegian health care as well as some disadvantages of the health care regarding their treatment and research for ME/CFS patients.
Good job and keep going it’s almost there.
Hi Eveline, I enjoyed reading your post.
When considering the content of your post and its relation to your photo, I believe that the two are clearly related and support each other well. The content made me think about how awful it would be to be a patient in this situation. Having a problem that isn’t believed or being told that the problem is their own fault simply because there is no medical evidence suggesting so. I believe it is important to treat patients holistically considering both their physical and emotional needs.
Your argument seems well backed up by the literature you’ve found. Putting your reflection first and then following it with your evidence makes logical sense and helps make your argument convincing.
Your refencing is present but some of your refences are incorrect. One or two of your intext references are missing a date and the sources in your literature list are referenced incorrectly.
With regards to your writing and grammar, considering that english probably isn’t your first language, I find your efforts commendable. However, there are a few errors in your sentence structure and word choices.
I found your post interesting and I am intrigued by the fact that even in a country with such good health care, improvements are needed to ensure all patients are properly taken care of. It makes me realize that as health care professionals we cannot only diagnose patients based on medical testing. It also helps us understand that even though a patient is not physiologically impaired, they may still have an impairment be it psychological or other.