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The original was posted on /r/cfs by /u/_hecalledmesubaru on 2024-08-07 16:02:40+00:00.

Hi everyone,

I’m a person with ME, but this post isn’t for me, but for a friend I met online. They’ve had Long Covid since 2020, though their ME/CFS symptoms were mild for those first three years. For a few months though, their health has been deteriorating. Not only have they been bed-bound for months, but they also have been having severe tachycardia, with very scary episodes (I forget the name of what they have, but it’s potentially very bad). They are so weak that they have been having a very hard time feeding themselves. They had a feeding tube for a while, but were not able to sustain it, as they’ve struggled with pulmonary aspiration and the likes. As a result, they have lost a lot of weight, to the point they now weigh 35kg (77 lbs). They live with their family, but their family doesn’t take their illness seriously, and are very much in denial of the situation. They believe that my friend has a psychological problem (which I know to be untrue, they very much have ME/CFS) and they believe that if only my friend took antidepressants and saw a therapist, they’d be cured.

Unsurprisingly, my friend is terrified. The combination of them being severe, them being underweight, having relentless tachycardia and horrible anxiety about the situation has put them in a vicious circle, where they just can’t recover from this crash.

I think they desperately need to get help for their tachycardia, anxiety, as well as their weight. They’ve seen a cardiologist in the past who had them try several betablockers, to no avail. Problem is, my friend is VERY sensitive to meds, and wasn’t able to do well on any of them. The side effects on them were extremely violent --think nausea, vomiting, pain, etc.

So here’s my question: what can we do to help them? What should the next step be? Are there treatments that might be better tolerated by them? I reckon they didn’t start with small doses and slowly work their way up. Is that something that can be done with heart medication?

Onto the next question: they live in Belgium, in the French-speaking part, to be precise. At this stage, they can’t get out of their bed to go see doctors. Is there any specialist that would accept to do telehealth with them? I’m thinking an ME-informed cardiologists would be a plus, but I’m not holding my breath.

I’m desperate to connect them with doctors who are knowledgeable about ME, and I think the situation is urgent. Any help with the situation would be appreciated.

TLDR; How can I help a bedbound ME patient who struggles with cardiac issues, anxiety and being underweight, but who is too med-sensitive for any treatment? Also looking for suggestions of doctors willing to do telehealth with them in Belgium.