Rename MECFS

Has anyone improved from the extremely severe? If so how? Please retweet for better reach thank you. ❤️

I would do anything to go back to 2021… I miss my life so much is ripping me apart.

it's a complicated subject, but a few ideas on how to keep going when in a dark place: Your mind and thoughts are not actually stopping you from surviving. Your body will keep going regardless of how you feel. So part of "keeping on" is realizing that they are only…

What changes in brain metabolism justify a huge decrease in functional capacity? (E.g. from mild to severe after a crash) We need answer to this question asap!!! #SevereME

In one year 1 covid infection and 4 single PEM episodes brought me from mild/moderate to very severe. I feel completely responsible for this, I failed to manage my condition and I created a monster.

I can’t believe I did this to myself, one careless afternoon and I zerod my baseline I feel like such an idiot and I am so scared for myself.

CN #verysevereME Dringend gesucht: Apotheke , die hypoallergene Trinknahrung herstellen kann. Die Person verträgt nur noch 1 Lebensmittel und die parenterale Ernährung sowie Infusionen nicht mehr. Schwerstes Untergewicht! Bitte RT und Tipps per DM. 🙏

I created a survey on LDN use in Long COVID. If you’ve tried it, please fill it out. I’ll share anonymized results later. My daughter’s experience wasn’t good, but I still filled it out, we need to learn from all cases. Please share to reach more people🙏🏻 docs.google.com/forms/d/e/1FAI…

We need drugs for the central nervous system metabolism of very severe patients. Please hurry!

What changes in the brain metabolism of a severe patient going from bell 20 to Bell 5? The disease is the same but functional capacity is strongly reduced. Why? Adaption in brain metabolism due to metabolic injuries. Find the the answer to this and we can solve Severe MECFS.

I don’t know why I can accept the idea that a disease can come and kill you, but not one where taking, thinking or feeling can make you permanently worse. #SevereME

2wks on truvada for #longcovid. So far increased brain fog, increased poisoned feeling, increased PEM the last 3 days. But could bw coincidence. The GI pain of the first few days seems to be subsiding tho.

The phase II RCT of #Daratumumab for #MECFS in Norway has been registered in the EU Clinical Trials Register. According to the study protocol, 66 patients with moderate to severe #MECFS will be recruited. euclinicaltrials.eu/ctis-public/vi…

I am scared af this crash is moving way too slowly, never had such a strong PEM for so many days, I hope it’s not the end for me.

We posted an update on our petition on 15 July: Karen has been particularly poorly recently. To read it scroll down our petition page to UPDATES. Save Karen Gordon from Dying of Malnutrition and Dehydration (…) chng.it/CGMQTDVvRb Please share. Thanks Karen Heather & Michael

Is it normal for very severe PEM lasting for 16+ days? Please retweet for better reach. #SevereME

In some cases, rapamycin causes permanent damage. Here is our experience. You can also see @bhanlon15 ’s experience and some others in the thread. I know some people benefit from it, but we also need to be aware of this side before deciding to take the medication.…

Ever since becoming allergic to lorazepam & having to taper off my life has become much more limited & difficult. It helped decrease my light & sound sensitivity & increased my ability to communicate and tolerate human presence. Does anyone know other meds that are similar? #pwme

Bridging the Gap: A Decade of Knowledge in One Guide. BHC’s free Clinical Care Guide helps clinicians better care for ME/CFS, Long COVID & IACCs. 📖 Read the story: bit.ly/45UbxK2 Get the guide: bit.ly/4jScKFu #MECFS #LongCOVID @openmedf

Repeated PEM (metabolic CNS injuries) is what leads to the lowering metabolic CNS adaptations that reduces a patient functional and metabolic capacity. Solve this and you solve severe MECFS. Please hurry!!!