If you don't try anything people accuse you of not wanting to get better.
Exactly.
If you don't try anything people accuse you of not wanting to get better.
Rituximab looked like a classic case of a phase 2 showing positive outcomes that didn’t hold up in phase 3.
You make a very good point — many drugs have been tested for ME/CFS outside of clinical trials (sometimes prescribed quite liberally, for example by well known ME/CFS specialist physicians) yet none has coincidentally put someone in remission (save for misdiagnosed people) or made more than a handful of people significantly better. Even in the latter case, that the blinded rituximab trial found a placebo response of 35% tells us to take any reported improvement from an open label, N=1 experiment with a grain of salt. Or rather a mouthful.
Being severe and having had my ME made more severe by a drug, I cannot afford to further deteriorate through an avoidable mistake. My personal policy before attempting any treatment that I may come across is to run the following assessment:
1) side effects: cross-checking multiple sources (for drugs: leaflets from my country, UK & US; NHS website; MedlinePlus.gov; Wikipedia; searching for literature; patient feedback)
2) review the preliminary evidence for ME/CFS, POTS and more or less related conditions; if unavailable, try to judge whether the proposed mechanism of action may be somewhat plausible
3) price, if not reimbursed by social security
4) accessibility, as I am bedbound and do not want the treatment to impose any further burden to my carers
This filters out 99.9% of candidates: many at step 1 and the rest at step 2.
Dam cheek - society barely funds any research and e.g. countries could provide specialist services and support intensive assessments/testing to try to understand and treat where possible + plus provide cohorts for research studies.If you don't try anything people accuse you of not wanting to get better.
I think* phototherapy + other things but those hadn’t worked until that was added (a certain type of antibiotic long term + short term steroids) to knock back my immune system for another condition (probably caused by ME underlying it) helped. I’d had a terrible few years health event for ME wise in the run up to that.
For about a year max though then off all of it and doing rather a lot my health was back downhill. It’s not the easiest treatment to go through either. As phototherapy is used for bad psoriasis too and probably other things I wondered whether you might have enough who'd tried it to maybe have some with ME saying the same if it worked that way for them?
but I wonder if there are not similar things that knock at certain parts of immune system that work for certain people
it’s been long enough since the last one that even as a cautious person who can’t stand well I’d give that one another go right now for me. Not as a cure perhaps but maybe the boost that just starts a virtuous circle enough to get feet under me to a slightly better quality of life.
For me not trying anything is giving myself the best shot at getting better. Even the anecdotal stories I hear about something which helps are sometimes followed a few months later with a report of how it stopped working, as the ME body seems to readjust to the level of shitiness it wants to be at even if you find something which seems to work for a while.If you don't try anything people accuse you of not wanting to get better.
I had a bad reaction to Mg infusions with plummeting blood sugar.
I've never heard of Mg infusions and they sound dangerous - it suggests to me that the patient is getting a massive dose, but I could be wrong. I take small doses of magnesium citrate powder roughly every other day to help with constipation and to reduce cramp, muscle twitching, and muscle spasm.
I will try various supplements or herbs if they are low risk, have some scientific evidence of effectiveness, and are cheap enough not to cause any financial hardship. If possible I also blind trial them, and take some sort of reasonably empirical measurements. This usually means trying to find powder or tablets that can be hidden in food by someone else, and recording my ability level on fixed cognitive tests and/or physical tasks.
This was almost 30 years ago. The doctor was respected integrated medicine physician who treated CFS and FM at that time.I've never heard of Mg infusions and they sound dangerous - it suggests to me that the patient is getting a massive dose, but I could be wrong. I take small doses of magnesium citrate powder roughly every other day to help with constipation and to reduce cramp, muscle twitching, and muscle spasm.
Me too, a long time ago.I’ve stopped experimenting.