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...
June 20, 2025 at 8:24 AM
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.
Hope science cures this disease soon so your son can have a better life.
June 20, 2025 at 8:22 AM
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.
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.
May 31, 2025 at 10:51 PM
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...
orbi.uliege.be/bitstream/22...
May 8, 2025 at 10:46 PM
Don't forget neuroSPECT scans! Mine looks like this - = hypoperfusion, + = hyperperfusion
orbi.uliege.be/bitstream/22...
orbi.uliege.be/bitstream/22...
Here's what my SPECT looks like (- = hypoperfusion, + = hyperperfusion)! No help offered but to "live with it".
May 1, 2025 at 10:55 PM
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.
M'n hersenscan toont trouwens wel extreme inflammatie/hypoperfusie aan.
April 25, 2025 at 5:06 PM
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.
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.
Kostprijs is ongeveer 25€/week aan 5mg/week.
April 25, 2025 at 5:03 PM
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.
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...
@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...
orbi.uliege.be
April 23, 2025 at 10:07 PM
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...
@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...
Link to the article
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
bjgplife.com
April 23, 2025 at 12:10 AM
Link to the article
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.
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.
April 17, 2025 at 2:09 AM
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.
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
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
April 17, 2025 at 2:05 AM
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
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
As I understand its a cheaper scan than an MRI and I got in within days
April 17, 2025 at 1:40 AM
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
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...
Mine shows clear problems with brain hypo- and hyperperfusion
orbi.uliege.be/bitstream/22...
April 17, 2025 at 12:53 AM
How about a SPECT scan?
Mine shows clear problems with brain hypo- and hyperperfusion
orbi.uliege.be/bitstream/22...
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.
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.
April 17, 2025 at 12:43 AM
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.
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.
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?
March 8, 2025 at 3:44 PM
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!
I tried 2mg up to 5mg once a week for 2 months but couldn't feel a thing either.
Best of luck!
March 8, 2025 at 3:40 PM
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!
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...
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...
March 5, 2025 at 9:39 PM
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...
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...
March 3, 2025 at 9:37 PM
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...
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.
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.
March 3, 2025 at 8:45 PM
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.
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.
Wou ook geen documentatie wou inkijken ivm post-exertionele malaise, long covid symptomen, herstelkans enz.
March 1, 2025 at 4:50 PM
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.
Wou ook geen documentatie wou inkijken ivm post-exertionele malaise, long covid symptomen, herstelkans enz.
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.
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.
February 28, 2025 at 11:47 PM
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.
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.
Spotify trouwens een deal van $250mio aan gaf.
February 27, 2025 at 4:09 PM
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.
Spotify trouwens een deal van $250mio aan gaf.