When a 17-Year-Old Girl Is Diagnosed with Myalgic Encephalomyelitis, 2022, Bergquist et al

[mango]

When a 17-Year-Old Girl Is Diagnosed with Myalgic Encephalomyelitis: A Case Study from the Swedish Health Care System—A Parent Perspective

Eva Bojner Horwitz, Jonas Axelsson, Olli Polo, Leif Widebert, Töres Theorell, Anabelle Paulino, David Ullman, Jonas Bergquist

Abstract

This case study presents different strategies that were explored by the patient’s mother (who is a researcher in music and medicine) when her 17-year-old daughter was diagnosed with ME (Myalgic Encephalomyelitis), also known as Chronic Fatigue Syndrome (CFS).

ME is not widely recognized in the Global as well as the Swedish population at large, and within healthcare, there are no standardized recommended treatments, partly due to the lack of published evidence-based studies.

This case study aims to provide insights into how the Swedish healthcare system works, how different clinics and hospitals within it operate and interconnect; and how these contribute to health outcomes after 15 months of treatment.

https://www.scirp.org/journal/paperinformation.aspx?paperid=119015

 

[BrightCandle]

This is a really abnormal medical response to the disease given how usually its anxiety and your shoved out the door with an SSRI and nothing else and that is it. The vast majority of ME patients never get a diagnosis let alone this level of tests and treatment.

When a parent starts to lose trust in the healthcare system, one might enter a loop of distrust between not only patient and doctor, but between patient/parent and society.

This really speaks to me personally, I have gone from a somewhat distrusting doctors to considering them evil combined with how society at large is treating ME patients. Peoples lack of humanity and their continuing gaslighting has not left a good impression of humanity as a species. Joining the underclass of those almost everyone can be prejudicial against has been awful and its all been led by doctors.

ME research has started to become a priority in the wake of post-COVID recovery [47]. Post-COVID patients are prioritized because, in the eyes of our society, they are suffering more than long-term ME patients [48]

Has it? The funding hasn't changed for ME and nothing seems to have actually practically changed that wasn't already. Long Covid is getting funding but its not trickling down to ME in any way. Ron Davis finally got funding but it wasn't from the NIH it was from the Department of Defence and that is probably the cause of Gulf War syndrome was determined and the DOD is liable for it. I see no wider acceptance of ME, no flood of researchers or the cutting edge moving at anything but a snails pace with the same faces. This I feel just isn't true. We wish it to be true but its not and we can see that every week in the meassociation papers of note where the Long Covid ones outnumber the ME ones 3 to 1 and often there is nothing for ME at all.

Its even worse than that because the bulk of research in the UK remains on exercise and CBT because the NHS purged all the other specialisms from the ME/CFS space when it put the psychologists and physiotherapists in charge. So there is no one to actually take that research money and do anything with it in a position with patients to test.

This is a case study of about the best case of ME/CFS medical interaction, its extremely rare levels of acceptance and attempted treatments. Even with all that care the top thing still comes out as pacing showing how there still remains no treatments proven to work in ME, after 80 years of research. We have a long way to go before this somatic version of the disease is turned around, a really long way and only then will real research be able to begin in any quantity.

 

[cfsandmore]

the Bragée Clinic, diagnosed C with ME according to the Canadian criteria [1]. Upon further investigation, the same clinic also diagnosed a Postural Orthostatic Tachykardia Syndrome (POTS) [2], a Chiari malformation [3] in the left cerebellum tonsil and general hypermobility.

In the 1990s, here in the US, when patients with Chiari malformation were given operations their CFS was cured. There was a TV broadcast about some of the patients. I asked Dr. Lapp about it, he said they were misdiagnosed as CFS.

The U.S. ME/CFS Clinician Coalition:
THE IMPORTANCE OF DIFFERENTIAL DIAGNOSIS
Some of the symptoms of ME/CFS are also observed in healthy people as well as people affected by other
illnesses. Appropriate treatment of these other conditions may completely resolve the patient's symptoms.
Thus, it is important to distinguish between ME/CFS and these other conditions. Important diseases in this
category include but are not limited to the following: NEUROLOGICAL DISORDERS,
Multiple Sclerosis, Parkinson's
Disease, Myasthenia Gravis,
Vitamin B12 deficiency,
Cerebrospinal Fluid Leak, Chiari
Malformation, Traumatic Brain
Injury, Spinal Stenosis,
Craniocervical Instability, Seizures

my bolding