Koen ME/LC

My eating greatly improved and I developed a real appetite for all kinds of cuisine. I could now eat steak and veggies and was no longer left at the table every night for an hour until my plate was finished but I could garble it down in minutes...

I had suspected light MECFS as a child and couldn't eat properly until I had a tonsillectomy done. At the time it was never linked to my low energy levels and I was just known as a docile easy child.

Hope science cures this disease soon so your son can have a better life.

There's a lot of emotions involved I can imagine. It's terrible to lose your life while you're still starting out.

Don't forget neuroSPECT scans! Mine looks like this - = hypoperfusion, + = hyperperfusion

orbi.uliege.be/bitstream/22...

Here's what my SPECT looks like (- = hypoperfusion, + = hyperperfusion)! No help offered but to "live with it".

Toen ik enkele jaren geleden nog beter was had ik met PEM na fysieke inspanning trouwens altijd aften in de mond, dus ik was op m'n hoede voor een verlaagd immuunsysteem. Maar heb daar totaal geen last van gehad.

M'n hersenscan toont trouwens wel extreme inflammatie/hypoperfusie aan.

Ik heb het op eigen houtje geprobeerd. Gestart aan 2mg/week, opbouwend tot 5mg/week en dat 3 weken aangehouden zonder enig (neven)effect.
Kostprijs is ongeveer 25€/week aan 5mg/week.

From Belgium:

@johanvawe.bsky.social
Persistent presence of SARS-CoV-2 RNA found in long COVID patients

Marc Jamoulle:
Vascular encephalopathy demonstrated by
brain single-photon emission computed
tomography (SPECT-CT scan) in Long
Covid patients

orbi.uliege.be/bitstream/22...

Suzanne O’Sullivan’s new book ‘The Age of Diagnosis’ and her curious characterisation of Long Covid as a psychosomatic condition O'Sullivan and others fail to recognise the likelihood that most Long Covid patients will have already tried psychological and behavioural approaches ... the idea that there might be issues that, if a

Link to the article

Yes, Rob Wüst is also researching those same changes for ME.

www.zonmw.nl/en/article/b...

PS it measures average blood flow over a longer time (minutes). So I believe it wouldn't hurt to go in with bad PEM.

Unfortunately I had to drive myself so I wasn't at my worst, but maybe the driving helped ramp things up.
We don't really know how episodic PEM causes these issues.

Yes, it's my first tangible result after lots of damage from graded exercise.

Trying to get into postviral care now and hope it will be enough proof to avoid further psychologisation (and attacks on my disability income). Can't CBT or FND actual blood flow problems...

Good luck and keep us updated

My PCP was willing to write the order. I just asked for a "brain SPECT" and gave her the PDF I linked and they wrote in the referral that I had severe PEM from covid with cognitive and physical exhaustion and unrestful sleep.

As I understand its a cheaper scan than an MRI and I got in within days

How about a SPECT scan?

Mine shows clear problems with brain hypo- and hyperperfusion

orbi.uliege.be/bitstream/22...

Metformin (XR)?

Heb door LC/ME flink last van energie/suikerdips waardoor ik vaak snackte na maaltijden. Dit helpt me echt enorm om de buitensporige eetlust te remmen. Zeker doordat ik amper het huis verlaat slechts nood heb aan zo'n 1200kcal per dag.

De behandeling van POTS bij Long COVID | Long Covid Centrum 2 januari 2023 De tekst van de podcast die je vindt op www.mepodcast.nl Vandaag praten we over de behandeling van POTS, maar voordat we daaraan beginnen wik ik nog even de criteria in herinnerring bre...

Voor ME al LDN of LDA geprobeerd?
Voor POTS Mestinon?

longcovidcentrum.nl/de-behandeli...

Isn't the Universal Credit already ridiculously low? As in not enough to live from? Or are there other systems in place to prevent sick people from going bankrupt/homeless?

What dose are you trying?
I tried 2mg up to 5mg once a week for 2 months but couldn't feel a thing either.

Best of luck!

So sorry to hear you're under pressure to either recover or lose benefits. It's an impossible task proving they don't understand the nature or recovery rates of this disease.

Wish I had some helpful advice but as you're aware I'm in a similar scenario. It's that they don't want to understand...

Not a Neuro SPECT-scan by any chance? In need of some objective proof ASAP myself! In Belgium we lack basic education on #LongCOVID with healthcare providers...

Low spoonie version of the PEM study of cerebrospinal fluid alterations in #MECFS

Een clinical trial die voor (zware) PEM weinig te bieden heeft.

Hopelijk wat toename in levenskwaliteit voor sommigen, maar niet iets met de potentie dat je er als ernstig geinvalideerde terug van kan werken in mijn ervaring.

Zorgwekkend, maar verklaart ook waarom mijn controlearts (België) niet wil weten van een aanslepende LC.
Wou ook geen documentatie wou inkijken ivm post-exertionele malaise, long covid symptomen, herstelkans enz.

Picture on a rollercoaster theme park ride of me with 3 friends

One of my last fun trips in 2020.

Wish I kept more pictures of 2021 when I was still able to go on small walks with #LongCOVID as well as my temporary remission on Meloxicam (NSAID which allowed me to exercise and go back to work for a few months).

Now I can't even stand YouTube rollercoasters.

Zielig, incel... Dat lost het probleem niet op dat ook ik brave huisvaders ken die naar Joe Rogan luisteren en er twijfelachtige ideeën opdoen. Net als 20miljoen andere subscribers van z'n podcast, waar
Spotify trouwens een deal van $250mio aan gaf.

We hebben een excuus om de ondertiteling aan te zetten😇 Het was bij mij toch hier en daar echt nodig, naar het Engels natuurlijk. 😂

Le bureau des légendes toevallig 2 maand terug gekeken toen ik een betere periode had. De moeite om te bingen.

That 300k house from ten years ago is now 500k. Inflation on large sums can't be outsaved on a single wage.

Becoming disabled and living alone definitely doesn't help.

De inzet van LDN bij ME/CVS - MECVS Nederland Vermoeidheidkliniek zet LDN standaard in bij behandeling Low Dose Naltrexon (LDN) wordt al langer ingezet bij de behandeling van ME/CVS. Naltrexon is een ontwenningsmiddel. Het is een hulpmiddel dat v...

Graag gedaan.

Deze pagina heeft ook een mooie PDF onder 'relevante links':
mecvs.nl/nieuws/belei....

De prijs is nog te overzien, als het helpt:
www.mijnapotheek.nl/ldn

It makes me angry when the reality of my existence is being denied. But I don't have the spoons to fight the medical system, nor to get the right support to deal with the medical trauma.

For now I have to be content with disability pay and being alive it seems. Bottom rung on the Maslow pyramid.