Mads

@amiandlife I had this and it was dishydrotic eczema - I used a cream from the GP

My first covid infection 2021. I was 16. I was so unwell. Noticed this rash so took a photo. Now I’m severely chronically ill with multiple conditions and I still notice this rash flare up sometimes. I wish someone had warned me. #longcovid #mcas

@laramecfs @TweetingTimo I’d like to know too

A year ago, I was completely housebound and had to spend my days alone on the couch. Today, one year later, I was able to celebrate Easter with my family and even go for a short walk. 💛 Endlessly grateful for this progress. Happy Easter to all of you. 🐣🌷 #MECFS

Research team finds clear, coordinated protein alterations in cerebrospinal fluid of #MECFS patients, indicating active immune and nervous system dysregulation within the CNS #Proteomics #Immunology #CSF (pic: Professor Jonas Bergquist, Uppsala University) nature.com/articles/s4159…

Easter is British 😂😂😂😂

All of this suffering, for #pwME & their families, could have been avoided, instead governments & @NHSuk are, far too frequently, still choosing to perpetuated it. @wesstreeting @SharonHodgsonMP @tessamunt #ME #MEAwareness #MedTwitter

@TeemuTagg In England, most NHS staff have made it their life’s mission to ignore Covid. They would rather let patients die - literally - than admit it’s still a problem.

It's that time of the year again... Happy Easter, guys! 🐣🐇🍫

@PlanetEarth_HD @seanstidston Me too - it’s like any kind of digestion is intolerable. Sometimes it feels like it overloads my brain. Autonomic symptoms, so much.

@seanstidston this is one of my worst issues i cannot eat anything without paying some kind of symptoms usually really bad aswel, i dont think its mcas because it happens with near every food, heavier the meal worse the symptoms

I epithelial barrier damage in the gut is much more a factor to symptoms than the microbiome changes focused on. Any time I eat too much or specific food. My vascular symptoms become worse.

What supps are we taking for glutamate issues which have actually worked for ppl? I hear GABA as a supplement doesn’t have much effect on the brain.

Is post-COVID depression partly immune-driven? ➡️ New study finds distinct salivary IgA autoantibodies in patients with depressive symptoms after COVID-19. ➡️ Key finding: -65 unique IgA autoantibodies detected -Present only in post-COVID depression group -Absent in healthy controls ➡️ These antibodies target human proteins linked to brain function and mood 👉 Suggests a possible autoimmune/neuroimmune mechanism behind symptoms. 1/

@JackHadfield14 What biomarkers will you look at? J think mast cells are huge for me too. But I got worse starting cromolyn a year ago, and have been more reactive ever since

Through biomarker testing I aim to refine this theory & then also understand the muscle weakness & VSS further. But if I could solve the cognitive & trigger based symptoms as a first step, that would be life changing.

I think I may have narrowed down the main driver of the worst part of my illness. Not all of my symptoms look like one single problem. The brain fog, head pressure and neuropathy may be one linked process, and it may point to a specific mast cell and nerve mechanism.

@erikmoldwarrior @laramecfs Yes it’s pretty poor, all of the systems have negatives especially when it comes to this illness

@Moonplanter_ @laramecfs It appears doctors had greater autonomy in the USA. Plus they were exposed to CFS history, which has a much different trajectory than the UK. Where British psychiatrists were quick to take control and miseducate everyone.

@erikmoldwarrior @laramecfs It will be on NHS record that you have ME already

@laramecfs Just describe your symptoms but do not mention ME/CFS. Let the doctor try to work it out.

@TanteRos @wesstreeting You can also have really high b12 but be functionally low. NHS don’t test this .. (MMA and homocysteine)

I had my blood taken y'day after waiting 11 weeks from an abnormal red blood cell result. Today I got a text saying my B12 & folate are normal. What a briiliant speedy service! I think this tells us labs are well staffed, community GPs & nurses very, very stretched @WesStreeting

Are there any u.k patients that are part of big uk support groups ? If email template was made for their M.P depicting the scandalous ignorance of covid and long covid. The lack of funding researching and trials. Do you think this would be worth doing. I know it’s done before.

@DarainChains @JasonS1269 How were you dx with the compressions?

Yes Michael! Exactly! I was. POTS MECFS and MCI Guess what it really is?! Vascular damage created compression in my pelvis and jugular veins! Years of no help when Interventional radiology could possibly save my ass from being in bed the rest of my life. Those diagnoses did not help. They only have hindered my ability to get the actual Covid damage assessed. Here I am with all the diagnoses and no help because they have me miscategorized as other illnesses and haven't thoroughly assessed my vessels or organs which we all know now SARS-CoV-2 harms and damages with scarring and fibrosis. Many have POTS diagnosis and zero clinical screening for vascular damage and these all cause major fatigue and malaise. Covid is Vascular. All the science agrees but because of the wrong labels being attached I am still here with zero treatment or therapy to get me moving. I am lucky to get a few hours when I wake up if I don't sit up to communicate with you all. Some don't even get that. Thanks for speaking out Michael!!

Idk what to do. reduced my low dose lamotrigine-it was making my structural dissociation feel worse (I have cPTSD) & I felt like I was observing my mind all the time. But a tiny decrease I have brain overload & can’t even think, but I feel more like me. #mecfs #longcovid

When a coroner warns @wesstreeting "there will be further deaths from ME unless action is taken" one expects the Health Secretary to take action. If more deaths occur, and the minister hasn't done so, he deserves to be charged with gross negligence. bbc.co.uk/news/articles/…

@anna_reise87030 I am exactly the same as you. My daughter started school in September (she’s 4) it’s a constant worry

Mir ist gerade klar geworden, dass ich nicht mehr lange lebe. Jede Infektion mit Corona hat mich kränker und kränker gemacht. Eine weitere werde ich nicht überleben. Gleichzeitig lebe ich mit einem Kleinkind in einem Haushalt, das in die Kita geht.

@amiautoimmunex Order some private tests online if you can afford to - a full thyroid panel which would probably do more than what the NHS do - I pay a phlebotomist £50 to do my blood. Then you could take the results to your doc who may be able to speed it up, but that’s poor regardless

been waiting for endocrinology for 5 months lol with my TSH sitting at <0.01. I just love the UK system rn!! (not)