News from the Visegrád Countries - Czech Republic, Poland, Slovakia and Hungary

Not much, but at least someone wrote about another ME/CFS and long covid related study and the good thing is that it appeared on a medical news site that is intended for doctors. (You are not even allowed to read 95% of their articles unless you prove you are a doctor but I guess the ones about covid are free to read.)

This website published a similar article a couple of months ago too and the author (probably the same person but only uses his/her initials) doesn't shy away from using the name ME/CFS. (Sometimes I feel that I'm the only person in the country who ever uses that name, including patients, so this is worth mentioning.)

The study was that American one from recently where covid long haulers were tested with CPET and 46% of them met the criteria for ME/CFS. The Hungarian article also mentions David Systrom's work.

So very rarely but something ME/CFS-related sometimes reaches the country.

Here is the one with Google Translate: https://otszonline-hu.translate.goo...h=http&_x_tr_sl=hu&_x_tr_tl=en&_x_tr_hl=en-US

And the original in Hungarian: http://otszonline.hu/covid-19-info/cikk/kronikus_faradtsag_long_covid_betegsegben
 
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Some of you may remember that about a month ago I wrote a letter to a Hungarian Member of the European Parliament. @Michiel Tack drew my attention to him after he spoke supportively about ME/CFS patients when Evelien Van Den Brink gave a speech in front of the petitions committee of the EP. This was that thread: EU Petition 2019 - opportunity to lobby for funding for ME research

Well, he replied!

Google translate:

Dear Ágnes Szarvas!

First of all, I wish you a successful Happy New Year! I am sorry that I have only now had the opportunity to respond to your detailed letter, which I have read with interest. Congratulations on your commitment, there is no doubt that this is the only way to achieve results, correct misconceptions, old theories and encourage the profession to take action. I myself have learned a lot from your letter, so I will try to help you to the best of my knowledge and ability. Based on your letter, I will contact the Secretary of State for Health and personally ask the Secretary of State to support the cause of ME / CFS patients.

Please let me know if you see any progress, the petition will certainly be back on the committee's table, and you can count on my cooperation in this.

Sincerely,

Dr. Ádám Kósa​

SentimentalWhiteGlassfrog-max-1mb.gif
 
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Two articles this time:

First: Prime example of how little these people understand what's going on and I'm only sharing this because it's so ridiculous that I don't know if I should laugh or cry:

Many struggle with anxiety, sleep disorders, but also with the weight of grief and trauma - Covid Survival Camp in Sicily tries to help them

This is for Hungarian people with long covid and everyone else suffering from any kind of psychological effect of the pandemic because of course these are all the same.

It is organized by one of the oncopsychologists (I mentioned it here that BPS people seem to be more focused on cancer here - or did so until now at least) and also a GP who has been a self-appointed expert on covid since the beginning with a strong social media presence and a lot of followers. However, she is the kind of doctor who is also a naturopath and I think I don't need to explain more.

Most of the article is actually about how amazing and wonderful Sicily is (which it probably is) and this is what it says about long covid (google translate):

Why treat the side effects of Covid-19? Why don’t they go away on their own as with any other illness? Dr. Gabriella Mangó, a general practitioner who has been compulsively trained as a Covid expert for the past two years, says: ”, Forgetfulness, tremors, muscle and joint pains occur and persist for a long time, making everyday life almost impossible. At the beginning of the pandemic, together with psychologists, I started the SOS Korona community group, which has grown into a self-help circle. The posts are dominated by loss, clueless, and ignorance. Post-covid, long-covid patients are reassured by the presence of professionals who can be clung to in such remote group therapy. Those from whom they can learn meditation techniques can take part in gentle, healing movement therapy, breathing therapy, and learn the basics of a wholesome meal. With new experiences, we can also strengthen their health awareness, so they can get over their symptoms physically and mentally as soon as possible. ”

(...)

Environmental and art therapy sessions led by professionals, practices that can be learned from common relaxation and meditation exercises and can be taken home can serve to replenish the body's energy stores, so you can face the challenges of everyday life with greater resilience. Our real goal is not only with more power, but in a different way. Stealing a lot more into everyday life from the gentle, organization-friendly, more conscious way of treating ourselves.​

So out of touch...

Article with google translate
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On a different note, I also read an interview back in November with Szabolcs Kéri, the psychiatrist who wrote the psychological part of the Hungarian long covid guideline (which says that if you don't have organ damage, you are a psychiatric case). He still says that long covid is influenced by biopsychosocial factors but he also said that something might happen in the brain (physically) which may then lead to psychiatric symptoms. So he at least says that the bio part may indeed be bio in the BPS narrative.

He still interprets the symptoms as panic and anxiety etc but he at least said this:

An interesting observation is that long-lasting, depressed mood, deep sadness, and feelings of hopelessness, which are characteristic of depression, are rare.​

Only the first part of the interview is free to read so I have no idea about the rest but here is the google translate version
 
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I took a look at the studies approved by the Medical Research Council last year in Hungary, so these are probably ongoing. These are the long covid related ones (these are also not the ones funded by the Academy, which I listed in this thread before). So the studies:

Google translate:

Title: Investigation of immunological and inflammatory biomarkers in patients with “long COVID syndrome”
Applicant: University of Pécs Clinical Center Department of Neurosurgery
Supervisor: Dr. András Büki

Title: Multidisciplinary Prospective Study of Long-COVID in SARS-CoV-2 Infection in Childhood
Applicant: Semmelweis University MSc II. No. Pediatric Clinic
Supervisor: Dr. Gábor Kovács
(I believe this is the same researcher who is looking for immunoepigenetic components in kids with long covid.)

Title: Long-term, continuous follow-up of the symptoms, clinic, laboratory abnormalities and complications of children with Long COVID syndrome
Applicant: Semmelweis University MSc I. Department of Pediatrics
Supervisor: Dr. Péter Krivácsy and Dr. Attila Szabó

Title: Study of Long-COVID-19 patients in an international collaboration
Applicant: Department of Pulmonology, Semmelweis University
Supervisor: Dr. Veronika Müller
(This may not be long covid as we know it, since a lot of pulmonologists seem to be convinced that long covid is the result of some sort of lung damage.)

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I haven't really seen studies that jumped out at me as "long covid is probably psychological" types. There were a lot of studies on the mental effects of the pandemic in general.


I also checked the last ten years for anything ME/CFS related and yep, I was right, there was nothing at all.
 
János Szlávik is an infectologist who is one of the people who talk the most about covid in the Hungarian media. Pretty much everyone knows who he is and every news site reports what he says.

This is what he said today (Google translate):


Regarding post-covid symptoms, János Szlávik said that after hundreds of millions of illnesses, there were plenty of people who noticed some symptoms in themselves. However, not all symptoms that occur after infection are associated with post-infection.

"Plus, the post-covid is going away

- He told.

During the first SARS epidemic, doctors noticed that the longest post-covid symptom is two years, but most will heal in a few months.

He also revealed that different coronavirus variants cause similar post-covid symptoms, but the good news is that vaccinations reduce the likelihood of post-covid. Anyone who becomes infected as a vaccine is less likely to suffer from post-covidium, the doctor said.​

He was talking about the first SARS and I don't know what he meant but according to this study this (that everyone recovers in two years) is absolutely not true at all: https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/415378

Original article: https://www.portfolio.hu/global/202...onavirustol-akkor-is-ha-megfertozodnek-527945
 
I'm putting this here because in the grand scheme of things it is not that interesting but locally it is a little bit. The main text is Hungarian but the abstract can be read in English:

Monitoring the development of post-COVID–19 syndrome, 2022, Tamasi et al.

Abstract:
Introduction: Extended symptoms may develop after a SARS-CoV-2 infection. We refer to these as post-COVID–19 symptoms and they are grouped according to time duration.

Objective: The aim of the study was to follow all COVID–19 infected patients in a family practise, to observe all post-COVID–19 symptoms, symptom development rates and to document how long they last.Method: 282 SARS-CoV-2 patients were followed mainly through telephone interviews between 01. 09. 2020 and 01. 09. 2021. Post-COVID–19 symptoms were monitored for 15–42 weeks every 4 weeks (30–50 weeks in cases of delayed hypsomia).

Results: Symptoms lasting longer than a month developed in 67% of all patients (170 cases). The most frequent symptoms were fatigue (79 cases, 29%) and hyposmia (74 cases, 27%). The latter mainly developed in non-smokers, affecting 2,5% of all COVID–19 patients beyond 43 weeks. Fatigue affected 46% of all post-COVID–19 patients. Sick leave was significantly longer among these patients (19.7 vs. 12.3 days in patients with no fatigue). Severe post-COVID–19 fatigue in non-hospitalized patients presented in a sydrome-like appearance displaying palpitations, fatigue, dyspnoea, sleep disturbances, loose stools and postural complaints. These regrediated after 19 weeks.

Discussion: Post-COVID–19 symptoms often develop after a mild COVID–19 infection. Severity of COVID–19 infection and severity of post-COVID–19 symptoms often do not correlate. Groups of hospitalized and non-hospi-talized post-acute COVID patients with fatigue can be distinguished by many attributes.

Conclusion: Mild COVID–19 infections may also be followed up by severe fatigue, but it spontenaously regrediates. Long-term effects of COVID–19 are permanent hyposmia and fatigue (the latter affect some hospitalized COVID–19 patients
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Link: https://akjournals.com/view/journals/650/163/9/article-p335.xml

I haven't read it all yet but found a part about CFS (google translate):
It is worth mentioning chronic fatigue syndrome (CFS), which is defined as a disease that lasts for more than 6 months [16, 17]. In CFS, rest does not solve fatigue complaints after physical exertion, while in post-COVID-19 complaints it does. What they have in common is female predominance, the complaints we have about standing still, the sudden onset of the disease and the unrestricted, functionally complete lifestyle that precedes it. The development of CFS is also often associated with an infectious agent (e.g., Epstein-Barr virus, human herpesvirus-6) [18, 19
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By standing still, they mean standing upright.

I might add another post later if I find something interesting in it. The lead author has the same name as a pseudoscientific, anti-vaxxer doctor here (one of the first winners of the Hungarian "Flat Earth Award" ;) ), but I believe him to be a totally different person. (I'm sharing this information for any Hungarians who might come across this forum.)
 
Possibilities for effective rehabilitation of post-COVID and long-term COVID patients with mild to moderate acute COVID-19, 2022, Bajzik et al
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This is in Hungarian and not available online, it was published in a muscoskeletal journal. So I have absolutely no idea about the text but I'm sharing it because I actually interacted with Éva Bajzik last year. And she didn't make a good impression on me.

I know about her because she also joined the long covid groups on FB. She is a physical medicine rehabilitation doctor (not sure about the proper English term, but I think you get it: a doctor specalized in physiotherapy). She runs her own business and is offering post-covid rehabilitation too.

She was looking for participants in the Fb groups to answer her survey about symptoms. I remember that PEM (or anything that even remotely sounded like PEM, like exercise intolerance etc) wasn't included in the options, so I told people to add it as an "other" symptom, which you could do. Then later she shared the results with the group, which looked like the typical results from these long covid symptom surveys. However, she added that when she specifically asked about depression, then it turned out that depression was the most serious problem for long haulers. (I have never seen that questionnaire, maybe she just emailed the original responders. But to me this sounded like she didn't like the original answers and asked until she got a result she liked. She even mentioned her result was surprisingly different from survey results from abroad.)

I also remember a different post of hers about effective rehabilitation and where I mentioned the link with ME/CFS, the dangers of PEM and even provided links to support the possible ME/CFS-long covid connection. Some long haulers told her that they tried everything and nothing helped and the problem is not so simple. My links were foreign (CDC, NINDS, etc), so she argued that these may not apply to Hungary because people in different countries have a different diet, different lifestyle etc, so post-covid syndrome here might be somehow that much different. That was a real facepalm moment for me.

I also remember that Edina told me (she is the long covid group admin and also the moderator in my ME/CFS group now) that she watched Bajzik's video on long covid rehabilitation and she told people to push through even if it hurts, like it is no big deal and she was even laughing. I remember that Edina was really offended by that.

So again, I have no idea what her publication really says as I don't have access. But we don't have a lot of long covid publications yet and I wanted to share the context.
 
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This is the second round of studies who have got funding from the Hungarian National Academy of Sciences for post-covid research. You can find the winners of the first round here. (I only list the medical ones, because in this case "post-covid" means literally everything, even the entirely different sociological, economic etc effects of the pandemic.)

No explanations were included this time, only the titles. Google translate:

- Auto-immune reactions targeting the heart in post-COVID patients (Péter Bay, University of Debrecen)

- Possible neuropsychiatric consequences of affective diseases such as post-COVID syndrome, identification of protein biomarkers suitable for prediction by proteomic methods (Balázs Döme, National Korányi Institute of Pulmonology)

- Training-induced compensation of cognitive decline in post-covid patients (Zsófia Anna Gaál, Research Centre for Natural Sciences)

- Effect of post-COVID-19 status on cerebral blood flow reactivity in physically active and inactive adults. Recognizing the role of sports in prevention / rehabilitation (Ákos Koller, Semmelweis University)

- The influence of the SARS-CoV-2 virus on the stability of tissue-specific endogenous microRNAs (Tamás Orbán, Research Centre for Natural Sciences)

- The effect of COVID-19 on DNA methylation: A key predictor of potential long-term consequences (Zsolt Radák, University of Physical Education)

- The long-term impact of SARS-CoV-2 infection on central nervous system development (Beáta Sperlágh, Institute of Experimental Medicine)

- Assessment of the long-term effects of COVID-19-induced mitochondrial dysfunction and unveiling of the suitable therapeutic options (László Tiszlavicz, University of Szeged)

- In vitro study of the effects of SARS-CoV-2 infection and COVID-19 vaccination (József Tőzsér, University of Debrecen)

- Investigation of the role of autophagy in the development of gastrointestinal complications of post-COVID syndrome (Klára Werling, Semmelweis University)

Source: https://mta.hu/mta_hirei/a-poszt-co...iai-palyazat-masodik-korenek-nyertesei-112036
 
Oh, I've just seen this: General Practitioners' Psychiatric and Psychosomatic Academy VII. (29th April-1st May)

Description: The course is an optional in-service training course accredited by Semmelweis University under code SE-TK / 2022.I. / 00114, with a credit score of 48 points.

It is an in-person event, so no chance for me to find out what they said.
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Here are some items from the programme. I've only included the more or less relevant ones. I also have to add that the topics the course covers seem to be broader than the title indicates, as they also cover things like anti-vaccine or anti-science movements for example or there is a virologist talking about the pandemic etc.

So the list with Google translate and with sometimes my comments:

- Mechanisms of Covid-19-associated cerebral inflammatory processes
Dr. Ádám Dénes PhD, neuroimmunology group leader
Research Institute for Experimental Medicine of the Hungarian Academy of Sciences, Budapest

My comment: He is the same person who is doing the microglia study on covid long haulers.
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- Psychiatric aspects of post-covid syndrome
Prof. Dr. János Réthelyi, head of the department
Semmelweis University MSc, Department of Psychiatry and Psychotherapy, Budapest

- Subjective cognitive impairment, mild cognitive impairment, mild dementia: confusion?
(Richter Symposium)
Dr. Tibor Kovács PhD, medical assistant, associate professor
Semmelweis University, MSc, Department of Neurology

- Psychological aspects and treatment of post-COVID syndrome in GP practice
(EGIS symposium)
Prof. Dr. Péter Torzsa, head of department
Semmelweis University MSc, Department of Family Medicine, Budapest

My comment: I've seen this one also posted as an article in a medical magazine aimed at GPs. I couldn't access it because only people who can prove they are doctors have access. For some reason the serious medical websites (at least the ones I've seen) seem to be like this here and it is even explicitly stated that patients are not allowed to read them. This makes my work more difficult of course.
--

- Spirituality in healing
Prof. Dr. György Purebl, head of the department
Semmelweis University, Institute of Behavioral Sciences, Budapest

My comment: I'm sharing this because :wtf: But also because this is the person who wrote a guide for covid long haulers with psychiatric symptoms on how to get better. BPS stuff. It was widely shared by the media, mentioning how great and helpful this is for poor long haulers.
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- Sleep disturbance and chronic fatigue syndrome
Dr. Katalin Várdi Visy, chief physician
Buda Health Center, Budapest

My comment: I've found her interests somewhere:

Non-neoplastic lung diseases
Cough, shortness of breath
Rehabilitation following serious illness
Options for physiotherapy and dietary psychotherapy for chronic respiratory diseases
Sleep medicine has given special attention to sleep apnea, sleep apnea and their care.
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- After Covid-19: Recognition and treatment of anxiety disorders (panic, compulsion, generalized anxiety disorder)
Dr. Gabriella Ágoston, psychiatrist
Source Private practice, Budapest

Source: https://convention.hu/Rendezveny/Reszletek/HOPPA22/TudomanyosProgram
 
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Campaign from Semmelweis University (regarded as the No. 1 medical school in the country) for children with long covid, where they are trying to help their rehabilitation by taking them to all kinds of fun activities the kids request, to the zoo, adventure park, gokarting, horse-riding etc. One of the doctors in the article below is Péter Krivácsy who actually leads one of the pediatric long covid studies funded by the Academy.

Google translate:

We can give children experiencing the long-term effects of COVID an experience in the Semmelweis University Foundation's campaign

A visit to a riding school, an adventure park, the Palace of Miracles, a zoo, or just go-karting, participating in windsurfing, visiting a car factory. Such and similar “experiences” can be donated to children treated for the long-term effects of COVID-19 as part of Semmelweis University’s campaign through April 3rd. Through the semmelweis.hu/elmenyajandek interface, we can not only support the nearly 200 patients of the 1st Pediatric Clinic in this way, with the programs they personally choose, but it is also possible to help the clinic's patient care activities with offerings.

Since the end of March 2021, the Department of Pediatrics at Semmelweis University has been hosting children who persisted for more than a month after their coronavirus infection and had persistent symptoms that worsened their quality of life for weeks. “We have cared for and cared for about 300 children so far, and the symptoms are extremely diverse,” said dr. Péter Krivácsy, head of the Emergency Department of the 1st Department of Pediatrics, director of long-term COVID care for children. More than fifty symptoms have persisted for weeks and months after coronavirus infection, the most common of which in children are impaired concentration, headache, persistent fatigue, indigestion, drowsiness, and reduced capacity for exertion.

Employees of the Semmelweis University Foundation (SEA) first approached companies before Christmas whose services were on the children’s wish list. It is a great pleasure for the SEA that many people felt the initiative was important and joined the campaign, as a result of which 60 children and their families were already able to participate in the program of their choice.

In the campaign, which continues now and will run until April 3, we can give an experience to an additional 150 children from the clinic who are struggling with the long-term effects of coronavirus infection. As before, those interested can choose from a list of fifty programs that they would be most happy with, and we will allow them to fulfill their wishes from the funds received, dr. Tamás Hegedüs, head of the Alumni Directorate, which organizes the program. The entire campaign is coordinated by the fundraising working group of Semmelweis University. Éva Szabó, Vice Rector for Strategy and Development, and dr. Marcel Pop, Head of the International Relations Directorate, under the direction of the Rector's Commissioner for Fundraising. The experiences requested by the children include a zoo, a tropical garden, a game park, a puppet theater, a candy and car factory, a stadium and an airport visit.

According to Dr. Péter Krivácsy, the experiences given during the gift campaign help the process of rehabilitation of their patients, in which psychological support also plays a major role.
Further details can be found at semmelweis.hu/elmenyajandek.
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On a different note: I don't know how it is elsewhere but here we have lots and lots of thermal spas with wellness centres etc. Most of these now advertise themselves as a place of rehabilitation for covid long haulers, they offer "packages" and programmes for them specifically. So it seems that here it is mostly the thermal bath industry that is after them.
 
There has been a conference organized by the "Consensus for Health Circle of Experts" where different kinds of academics (epidemiologists etc) evaluated the response to the coronavirus pandemic. It wasn't very positive, they found it unsatisfactory in several different ways, but that's not my point. Based on the articles I've read about it there seems to be only one person who mentioned long covid: "Marton also considers the complete neglect of the post-Covid and long-Covid issues to be wrong."

It's the first time I hear this in Hungary. And that person? Not a doctor or anything similar. He is from Corvinus University, which is a unversity of economics and social sciences.
 
Long, two-part article about long covid that mentions ME/CFS a lot and talks about PEM. Written by a GP and psychoterapist who periodically writes similar articles on long covid. This one is based on several recent "6 tips to beat long covid" type of English articles. You may remember some sentences that were criticized on S4ME in connection with those articles. It appeared on a popular health website, similar to WebMD.

2/1 Post-COVID exhaustion, the most stressful post-COVID symptom and causes
2/2 How to deal with post-COVID fatigue?

Some excerpts (Google translate)

About the long covid and ME/CFS connection:
Although a limited amount of research is available on what specifically causes fatigue after COVID, some experts say there is a kind of imbalance in the body's natural immune responses when trying to fight certain types of infections. COVID-related fatigue is similar to myeloencephalitis / chronic fatigue syndrome (ME / CFS), a complex disease that affects approximately 800,000 to 2.5 million people annually. ME / CFS often results in patients being unable to live as they used to before catching the diseases that lead to their fatigue. These include quality of life problems such as fitness problems during training or housework, decreased work or school performance, sexual dysfunction, libido or other problems with intimacy, and lack of motivation to spend free time.

Many who have experienced ME / CFS are not diagnosed; especially that not everyone in Hungary accepts the disease as a separate disease. Many believe that the cause of myalgic encephalomyelitis is a defective immune system. However, the diagnosis of post-COVID exhaustion can be made quickly and unambiguously because it usually occurs earlier than ME / CFS and because its appearance is clearly linked to the diagnosis of viral infection.
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We already knew about chronic fatigue syndrome, also known as myalgic encephalomyelitis, long before COVID. This often occurs after a viral infection (such as an Epstein-Barr virus infection). Thus, the coronavirus, which can potentially cause chronic fatigue syndrome, may be of concern.

There are also striking similarities between chronic fatigue syndrome and long-COVID, both of which can be associated with debilitating fatigue, brain fog, and / or muscle aches.

However, research is still ongoing to explore the exact relationship between post-COVID exhaustion, long-term COVID, and chronic fatigue syndrome.

So far, it is so certain that many people will experience post-COVID fatigue, but fortunately not everyone develops long-term COVID or chronic fatigue syndrome.
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About long covid fatigue:
What is the duration of exhaustion after COVID and for how long?
Different things in each person can contribute to post-COVID exhaustion, which can take a long time. Low levels of physical activity, a disturbed daily routine, poor sleep habits, disturbed circadian rhythms, strenuous work, other caring responsibilities, low-lying mood, anxiety, and stress can all worsen fatigue and increase fatigue.

According to data collected in a COVID study called ZOE, fatigue usually occurs in the first week of the illness and lasts for an average of five to eight days, although some people may experience exhaustion due to COVID for two weeks or more.

The severity of exhaustion is often associated with the severity of the disease. In general, the more severe the illness, the longer the fatigue lasts. Individuals who have had to be placed in an intensive care unit due to COVID-19, for example, may take a few months to return to the state of fitness they were in before they became ill.

Research shows that people who, although feeling unwell, are able to recover from a coronavirus infection at home typically take only a week or two to get tired.
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About PEM (it is not mentioned that PEM is borrowed from ME/CFS or it has anything to do with it):
Fatigue and exhaustion are common during and after an illness. Fatigue that lasts for weeks or months after a serious illness can be completely normal. People recovering from an illness often report feeling a little better every day and it can take a full time to recover. Research shows that about 7% of people with mild to severe COVID-19 develop long-term symptoms. However, if you have long-term COVID, you may feel tired after activities you have not had difficulty coping with before, which can affect your quality of life and performance. And this condition is more likely to appear at the end of a tiring day or at the end of a busy week.

Sometimes those affected experience a number of other symptoms in addition to exhaustion, which worsen after exercise. These symptoms may include, for example, a brain tooth, possibly muscle or joint pain, or a headache with increased fatigue. Clinicians refer to these as “post-exercise symptoms”. They are not necessarily dangerous in themselves, but they can significantly affect your quality of life.

What is the cause of these post-exercise symptoms?
The exact reason is not yet completely clear. The causes and symptoms can vary from person to person and are usually related to physical exertion. You can feel exhausted by any exertion, both mentally, emotionally, and physically.

8 tips for managing fatigue after exercise
During recovery, it is important to find the right level of activity for you to avoid severe symptoms but stay healthy. You need to listen to your body during the healing process. Failures may occur, but due to proper balance, it is important to avoid further deconditioning.

-Try to build your activity gradually according to the symptoms you are experiencing.
-Try to find the right balance between activity and relaxation: planning, setting priorities, and scheduling.
-Frequent switching between different types of activities (such as mental and physical activity) can help, instead of doing the same type of activity until you are exhausted.
-A good quality rest can be difficult, but it is a very important aspect in achieving recovery. But if you avoid all activities, or if you are immobile for a long time (such as prolonged lying down), it can cause additional problems due to loss of muscle strength and fitness, and you will be more likely to experience an increase in fatigue when you try to do something.
-If you start to notice a lasting improvement in your symptoms and you have more good days than bad days, gradually increase your activity levels.
-Put the essential tasks first, instead of feeling like you have to do everything. Ask for help with your tasks.
-Try breaking down complex tasks into sections.
-Spend energy on things you enjoy to improve your quality of life.
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She seems to be intrigued by this topic so I'm crafting a polite message to her about the shift in how ME/CFS is viewed and treated currently and see what happens. She seems to be relying mostly on these articles circulating on the web, so I'm not 100% sure about her own views. Maybe it's BPS, maybe she is just a bit misguided (after all she was OK with saying the immune system may be responsible for ME/CFS). Worth trying.

Edit: she previously wrote about POTS and long covid and that wasn't a bad article.
 
An update of what is going on advocacy-wise (not much right now but maybe soon):

Maybe you remember that after Evelien Van Den Brink talked about ME/CFS in the European Parliament, a Hungarian MEP appeared supportive of the cause and when I messaged him, he offered to talk to the Secretary of State for Health. (I complained to him that no one from healthcare even replies to my letters when I messaged them about the NICE guideline and the general shift going on in connection with ME/CFS and that these patients are simply ignored here by everyone.)

This was a couple of months ago, so a couple of weeks ago I messaged him and got this reply:

Dear madam!


Thank you for your honorable letter. As promised in a letter, I contacted the Secretary of State. The topic is not unknown to home officials either, but in the run-up to the election, I am not sure we will get an answer to our request. However, I can assure you that we will raise the matter again after this period and, although there is a new (main) member of the PETI Committee in our delegation, I will work closely with my fellow Member to move forward not only in the EP but also at home.

Thank you in advance for your patience and understanding!


Sincerely:


Ádám Kósa​

Now the election is over, so we'll see what happens and when. But we are not forgotten at this point.

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The other thing is my GP. This was a long time ago, so maybe you don't remember but after seeing my struggles with even finding someone who would give me an ME/CFS diagnosis, he offered to help start ME/CFS consultations in his polyclinic. (It is the polyclinic of my district in Budapest and he is the medical director there.)

However, he was very busy with covid so everything was delayed. He told me to remind him from time to time though. Which I sometimes do and when I do I also send him things I think might motivate him more or would be good sources. He already has all the really important literature (IOM, NICE etc) and I sent him the tweets and articles about what the British, German, Austrian healthcare minister said or what they are planning in Germany and the Netherlands or what is going on in the European Parliament and what is going on with my advocacy projects, etc. Also the connection with long covid of course, so he can see that this is actually very important.

The problem is that I still don't know what he really thinks about all this and what kind of care for ME/CFS he would support in the end.

However, very recently I've found out something about him: I don't know the English term for this but you know there are GPs who supervise other GPs and their work in primary care in smaller areas and there are other GPs on top of these as the head of a whole region and eventually someone responsible for the country. So apparently my GP is the GP boss of Budapest! Well, now I'm even more motivated to "convert" him.
 
A couple of weeks ago I wrote something about the thermal bath/spa industry and that it seems they are the ones mostly after long covid patients in Hungary with all these ads of their special post-covid packages.

Well, looks like I wasn't wrong. The National Academy of Sciences and the Ministry of Human Capacities (healthcare is part of this) decided to start some collaboration in connection with processing, evaluating, publishing covid data, research etc. And now I saw a PDF document about this signed by the Minister of Human Capacities (but written by several different people) that summarizes things so far.

There is a section about post-acute covid sequelae (which is mostly about identifiable organ problems, so not much info on the type of long covid we know). But this is how this section ends:

Google translate:

It is well known that Hungary is especially rich in thermal waters and spas. Hungarian balneotherapy research is also of an outstanding international level.

In addition, balneotherapy and spa rehabilitation are more favorable in terms of financing than active hospital care, so PACS can also be used in rehabilitation. Physio-balneotherapy is effective in the rehabilitation of almost all of the organ damage mentioned earlier.

In terms of locomotor organs, it improves muscle strength, increases muscle mass and coordination. In terms of respiratory effects, it reduces shortness of breath, improves respiratory function and oxygenation. From a cardiovascular perspective, it stimulates circulation, oxygen supply, improves myocardial function, and lowers blood pressure by enhancing mitochondrial biogenesis and angiogenesis. As for the neuropsychiatric effects, it reduces pain, improves mood, reduces stress, stimulates cognitive function and improves sleep.

Protocols are being developed at several national and international centers for the rehabilitation of PACS in conjunction with physio-balneotherapy. Internationally, the InnovaSPA consortium, of which domestic centers are also members, is organized to address the need to design and develop PACS care in regional spas. The developed protocol (s) can be well applied in Hungarian spas as well, which facilitates the care of PACS patients and removes the burden of active patient care.
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Getting real hard for medical authorities to criticise Chinese Traditional Medicine at this point, or even any cultural medicine. Or any alternative medicine. Or just about any pseudoscience.

The entire basis for what makes alternative medicine problematic is making baseless claims. Baseless claims are now so common in medicine no one is even bothered anymore, the masks are off. What would have been unthinkable years ago is now so common it's basically unnoticed, it has crept everywhere organically.
 
rvallee said:
Getting real hard for medical authorities to criticise Chinese Traditional Medicine at this point, or even any cultural medicine. Or any alternative medicine. Or just about any pseudoscience.

The entire basis for what makes alternative medicine problematic is making baseless claims. Baseless claims are now so common in medicine no one is even bothered anymore, the masks are off. What would have been unthinkable years ago is now so common it's basically unnoticed, it has crept everywhere organically.
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Well, to be honest, Semmelweis University (regarded as the best medical university in the country) went ahead and started a Traditional Chinese Medicine BSc programme. Google Translate

And if you want to hear something really crazy, the Minister of Human Capacities (this is where healthcare belongs to but also other areas) is an oncologist, director of the National Institute of Oncology and also a guy who says things like: If you obey the 10 commandments then you can avoid 70-80% of the deadly diseases. This caused an uproar, so he corrected himself and said you can actually avoid 90% of said diseases. The 10 commandments are the perfect public healthcare programme and anyone who criticizes him lacks logic and is pseudoscientific.

Not kidding. During the pandemic he actually started to become uncomfortable to the government a bit because he made them look incompetent with his public appearances and the things he said and did, so while he is still in the same position, he was moved into the background a bit and it is the Chief Medical Officer who makes announcements about covid etc.

I actually really hope that the ME/CFS situation will not reach his level and it will be dealt with at a lower level below him (if it ever gets dealt with). I'n hoping for someone more reasonable.
 
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Wyva said:
This caused an uproar, so he corrected himself and said you can actually avoid 90% of said diseases. The 10 commandments are the perfect public healthcare programme and anyone who criticizes him lacks logic and is pseudoscientific.
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I saw a similar comment from a physician saying something similar but about exercise and lifestyle, that 90%+ of diseases could be avoided if people weren't just stupid. It's the underlying thought process, the magical thinking, that is the problem, however it gets justified is irrelevant, it's the belief system that stems mostly from very healthy and privileged people speculating about what it's like to have a life they can't possibly imagine. Like multi-millionaires talking about extreme poverty, it just doesn't process at all.
 
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