No longer fulfil CCC? Now mild but still have PEM
TLDR: I’ve just been to an appointment at Charité in Berlin as part of a study, and I fear I have represented myself as better than I am when talking to the doctor - resulting in her saying I basically don’t have me/cfs anymore since I don’t fulfil the Canadian Consensus Criteria anymore. Now a bit lost and worried this will hurt me down the line.
Anyone had a similar experience?
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I’ve been sick for three years, have the diagnoses me/cfs and pots and have mostly been mild to moderate, sometimes with stretches of severe crashes, but luckily always made it back to baseline.
Recently (about 2-3 months) I have seen huge improvements (possibly thanks to LDA), have been on holiday, even went on two little hikes (really short and with lots of breaks) and are able to socialise. I am hoping to start work in autumn, but don’t think I could do more than two hours a day, which is my current goal.
I still feel incredibly exhausted all the time, have headaches every day, and struggle to sleep properly without medication. I never feel healthy and I need to carefully plan every activity. I constantly cancel plans and am limited in the amount I can walk without a break. Most importantly I still experience pem, but it comes less frequent and is much weaker. For example I don’t have to completely lay in bed every time and can sometimes still do some light activities like cool an easy meal etc.
As part of a study I had a lengthy talk with a doctor at Charité in Berlin about my illness trajectory and I think I may have said something like “I don’t have proper pem anymore”. I meant that it is nowhere near as bad as it was but I still get worsening of symptoms after exertion that lasts sometimes more than 24h. But I did say that now sometimes it is less than a day and that sometimes I can sort of “sleep it off”. I also haven’t had a major crash for a bit over one month.
I think she concluded from that that I don’t have pem and therefore don’t have mecfs according to the Canadian consensus criteria (others I still meet). She did say she thinks I had it, but now don’t fulfil the criteria anymore and have just “post infectious syndrome” instead or something like that.
I felt pretty shocked when she said that and couldn’t really react, but I worry that I have misrepresented how I am doing and basically made myself look too well. I tend to do that because I’m so happy I am better and compared to those severe or very severe I am really really well, but I am still very sick.
Don’t get me wrong, I do NOT want to have me/cfs, but I am worried that my medical record now shows me to me much better than I actually am. I am also now not getting considered for further studies because most use the ccc (rightly so).
Also I feel unsure what I should tell people now when they ask what I have? I don’t even want to tell certain family members about this assessment because I feel they might interpret that as “oh she’s fine, she needs to push harder”.
Has anyone had a similar experience?
Especially those of you that are mild or very mild: do you still meet the ccc criteria?
Has anyone told you you don’t and do you still say you have mecfs?
Feeling kind of lost right now and a bit worried this might have repercussions when my disability pension gets reviewed and so on. Also really scared I get worse again (it’s only been a few months of improvement tbf) which would make this assessment even more wrong.