Discussion in 'Regional News' started by Kalliope, Jun 29, 2020.
Looks like an excellent and important letter. It is signed by over 60 international ME experts.
The pages of testimonials from patients are very moving. Best wishes to the Czech Association of Patients with ME/CFS.
Well done to all involved. I hope the government listen.
Well done, an excellent letter.
Would a petition of support for the letter, perhaps with international signatures be any help?
So I am still building the ME/CFS community in Hungary, and as part of that I reached out to an immunologist/rheumatologist, who seems to be much more knowledgeable about this disease than most doctors here (based on the short but on-point summary he posted on his website). And in his reply he told me they are just planning to examine some people with fMRI to see if they find something. So this made me really happy, that at least something is happening here now, as opposed to absolutely nothing (except the standard psychosomatic, BPS direction).
Case report from a team in Slovakia using CPET for investigation of an adolescent with chronic fatigue - thread here:
Case report: Young and exhausted, Oleksak et al, 2021
Filip Olekšák, Peter Ďurdík, Ľubica Jakušová, Tomáš Turčan, Peter Bánovčin
Department of Children and Adolescents, Martin University Hospital, Slovakia
Video of Hungarian doctors discussing Long Covid in children - post and link here:
Possibility of ME or PVFS after COVID-19, Long Covid
First outpatient care network for post-covid syndrome will be launched in Hungary on 1st March by the University of Debrecen (the second biggest city). The first wave was really small here due to the early lockdown, so that is part of the reason why everything is in delay here.
It involves a network of infectologists, pediatricians, cardiologists, pulmonologists, rheumatologists, neurologists, psychiatrists and psychologists. From what I understand there will be a central outpatient clinic but also specialists outside the clinic will be part of the network.
The first examination has to happen between 3-6 months after the infection and another medical examination will happen 6-12 months later. If the symptoms are severe enough, patients can go before the 3-month mark.
They don't go into detail about how they are planning to treat post-covid syndrome but they say they will share some guides on their website for patients in the future.
Well, better than nothing, I guess. It would be better to know their views about the ME/CFS like symptoms but I guess sooner or later long haulers will share their experiences in the Facebook groups.
So now they have a short description on the website of the university (by the way, this post-covid clinic seems to be this university's own idea and is not an official response from the government/healthcare system or anything).
There's not much new information there, except that they also accept athletes/previously very active people who don't have long covid but would like to make sure they also don't have any underlying medical issues after their covid infection that they don't know about, before returning to sports.
And the more interesting part is that they have a short informational section for GPs and there they refer to "Management of post-acute covid-19 in primary care, Trisha Greenhalgh, Matthew Knight, Christine A'Court, Maria Buxton, Laiba Husain, BMJ 2020" (thread here: https://www.s4me.info/threads/bmj-m...-in-primary-care-2020-greenhalgh-et-al.16286/), which may not be perfect but it mentions chronic fatigue syndrome and that evidence is not so convincing about GET, and that they recommend being cautious about increasing physical activity for post-covid patients if they respond badly.
I don't know if this is something they follow in practice, but this is not a bad sign. And it is something I can cite myself if they (or anyone) seem to go against it, since this is the only paper cited on the website of the only post-covid clinic. (And it is great that there is a group of volunteers who translate covid-related studies to Hungarian and they translated this paper too, so at least that makes it a bit easier for me.)
OK, my excitement about the possible attitude of the Hungarian post-Covid clinic was a bit too early. Since I posted here they have also shared their pediatric guide for GPs. And there I found a sentence that says if no organic change is found during the medical examinations, they will be sent to a psychologist.
Looks like I need to write (another) post explaining what is wrong with this protocol and remove my recommendation of this clinic from my Facebook page and group.
It's not just for screening? You'd hope a GP could ask the questions needed to rule out a psychological cause for symptoms, but I guess seeing a psychologist as part of a screening process could be defended. Especially for a child, who might not be able to articulate their concerns well, or while a parent is present. I mean, it could go dreadfully wrong if the psychologist is driven by dogma, but, in principle it seems ok.
Of course, if no organic change being found automatically results in psychological treatment to remove faulty thoughts, then that is different and very problematic.
Maybe, it is hard to tell. Google translate:
To me it sounds like that once they don't find anything physical at the pediatric clinic's post-Covid clinic, then the kid is sent to the pediatric psychology clinic. From this sentence it sounds like the psychological clinic is not part of the Post-covid clinic.
Actually I looked up the child psychology clinic and there it says:
I'm not sure it comes through in English the same way but in Hungarian this "screened" sounds like that the screening process was over.
Edit: I have to add that here, so far post-Covid syndrome has been mostly viewed as some kind of organ damage. I rarely hear about the ME/CFS like complaints in the media. Whenever it is mentioned by doctors it is almost always either organ damage or psychological (anxiety, PTSD, etc).
So, finally the official Hungarian guideline for post-covid syndrome has arrived. (Additional info: we have no ME/CFS guidelines, at least I couldn't find any.) And yes, my suspicion was spot-on, things are really dire.
It's really long, very thorough and 90% of it is about damage to the lung, heart, certain neurological issues. 10% is mental health and there is exactly zero mention of the unexplainable long covid symptoms. (This has been true of media reports too, it's like this problem just doesn't exist here, you have either organ damage or PTSD/anxiety. I feel I am the only person in the whole country accurately reporting about long covid - and I'm not exaggerating here.)
Anyway, here is the interesting part, from Google translate:
This sounds like this was specifically written for ME/CFS, especially f) and b). But especially F.
Ugh, I'm so angry now, I won't be able to sleep.
So sorry to hear that. It must be so hard feeling you are fighting a lonely battle on this. Surely others will realise there's a problem soon.
I hope so!
A few weeks ago a reporter from the biggest TV station showed up in the long covid Facebook group, she was looking for material, people she could interview. I took the opportunity and sent her some of my articles, eg the summary of that great New York Times article about the long covid and ME/CFS connection, the short guide I wrote specifically for covid long haulers with potential ME/CFS, so that they can understand the situation quickly and easily etc. I told her this is nothing new and I believe I made her job quite easy with all the easily digestable material I sent her. (Making my articles accessible even for total outsiders is one of my priorities.) She was excited and very grateful. And then she chose not to include any of it in the report at all. Zero mention of ME/CFS or that long covid is not unprecedented. Maybe I'm naive but I thought this was actually a great story, something that might interest the media at least a little bit but I was mistaken.
Anyway, not giving up, tomorrow I'm going to post something about why the long covid guidelines are unacceptable.
How disappointing but well done for trying. Very hard when you expend valuable effort to have it disregarded.
You never know what seeds might have been sown though. Maybe her piece was edited. Maybe in a few months time or a bit more she'll want to revisit that angle. Or her editor will. One can hope.
Mental health related long covid clinic set up in Hungary
If you haven't had enough of reading BS on long covid yet: now there is a long covid clinic in Hungary specifically for people dealing with mental health issues afterwards (it is part of the National Institute of Psychiatry and Addictions). Which in itself wouldn't be a problem but here is what the director of psychiatry said - and mind you, here long covid is seen as either organ damage or mental problem (google translate):
These people have no idea what they are talking about.
And now they are working on a guideline (I guess specifically on mental health because that wasn't very detailed in the general long covid guideline).
Separate names with a comma.