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This is really appalling, especially if you remember how things went down for pwME in the Czech Republic a few years ago. The patient org wanted the country to adapt the new NICE guideline and the Ministry of Health kind of promised to develop one. Then unexpectedly the whole process was stopped...

Abstract Background: This study aims to explore the perceptions and clinical approaches of pain management specialists toward myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a condition characterized by persistent fatigue, widespread pain, unrefreshing sleep, and autonomic...

@Yann04 I remembered this paper by Bateman et al that was published in Mayo Clinic Proceedings. It is not about the HADS scale specifically but a consensus recommendation for ME/CFS in general: https://www.mayoclinicproceedings.org/article/s0025-6196(21)00513-9/fulltext You might find this part...

I didn't do a full detailed article about this in the end but decided to incorporate it into an article about why the BPS model has failed and this is one of the methodological problems I talk about. But it is not very detailed and is in Hungarian, as I intended this article to give insight into...

He played Superman in the 70s and 80s and he was pretty famous back then for it. His story was of course tragic in itself to begin with but the fact that he was widely known as Superman, the opposite of a paralyzed person basically, probably touched a lot of people back then even more (he had a...

Offtopic side story: A couple of weeks ago I watched the documentary about Christopher Reeve. It dealt both with his film career and his accident and aftermath. And there was a part that struck me as really odd. He of course tried to draw a lot of attention to paralysis and did a lot of...

It's in the Introduction: "The impact of CFS/ME on patients can be profound, with many individuals experiencing a significant decrease in their quality of life and ability to perform daily activities. In severe cases, patients may be bedridden or housebound, unable to work or engage in social...

This is a Hungarian study where Ádám Dénes was the senior author. I already mentioned him a couple of times on the forum, as he sometimes talks about long covid in the media (but never about ME/CFS). Here is the accompanying press release from the website of the Hungarian Research Network...

Full title: Microglia dysfunction, neurovascular inflammation and focal neuropathologies are linked to IL-1- and IL-6-related systemic inflammation in COVID-19 Rebeka Fekete, Alba Simats, Eduárd Bíró, Balázs Pósfai, Csaba Cserép, Anett D. Schwarcz, Eszter Szabadits, Zsuzsanna Környei, Krisztina...

Thanks @NelliePledge It indeed doesn't seem to be particularly problematic. Something I'd like to share though: Janszky always seems to make a big deal out of the inconsistencies in the prevalence of LC. This is how he started his presentation at the LC symposium of the Hungarian Academy of...

The Bell scale probably: https://me-pedia.org/wiki/Bell_CFIDS_disability_scale

My sister says it is also very popular in the Hashimoto's/hypothyroid online groups she is a member of. It indeed seems to work for every disease... o_O

Leitzke is the doctor who promotes nicotine patches for long covid. This seems to be quite a popular treatment with pwLC.

Same experience here. I don't remember the exact dose now but I took vitamin D for quite a while in my early days of ME/CFS after mono/glandular fever, thinking it might be helpful. It did nothing, so I stopped.

I'm not sure if this is true ME/CFS research or not. May be just chronic fatigue.

Now published - see here ************* Kang Wu, Yihuai Zou, Yuanyuan Li, Xiaojie Hu, Yahui Wang, TZ CHEN, Yuhang Chen, Kuangshi Li Abstract Chronic Fatigue Syndrome (CFS) is a disease characterized by unexplained fatigue and impaired cognition for more than six months. Recent studies have...

Unfortunately it is paywalled. My additional info without knowing the content: Andreas Stengel is very clearly a BPS guy who publishes stuff like this and so is József Janszky, who I just call the Hungarian Michael Sharpe and who seems to love to complain about ME/CFS and long covid patients...

Full title: A comparison of genome-wide association analyses of persistent symptoms after Lyme disease, fibromyalgia, and myalgic encephalomyelitis – chronic fatigue syndrome Annemarie G. Hirsch, Anne E. Justice, Amy Poissant, Cara M. Nordberg, Navya S. Josyula, John Aucott, Alison W. Rebman &...

Key points Modern medicine routinely fails to make sense of ME/CFS and long covid. This incoherence, along with wider stigma, leaves sufferers frustrated and confused. A systems view of illness encourages us to consider how states of imbalance arise across bodily systems. Viewing symptoms as...

Full title: Assessment of psychosocial aspects in adults in post-COVID-19 condition: the EURONET-SOMA recommendations on core outcome domains for clinical and research use Stefan Salzmann, Lars de Vroege, Petra Engelmann, Per Fink, Susanne Fischer, Stephan Frisch, Lise Kirstine Gormsen...