Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

Example of rapid progression from stable mild to severe level crash.

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Have been crashing over last few weeks. as of 48 hours ago I can no longer walk at all. I can’t make it to bathroom without heart racing and legs trembling (no longer trying to either). Lost ability to swallow last night. I was very mild 3 months ago. I could ski, hike, go out with friends. Not on any meds.
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They had tried new supplements, though I suspect not related to deterioration and didn't precede the overall deterioration. Note the cycling of onset of symptoms followed by apparent recovery, then deterioration. This mirrors my own experience.

I tried to travel abroad for the first time getting sick. Had new onset severe pain, went to ER. Combo of er miss dx + jet lag + drug side effects ended with me in the hospital for 3 days. Got worse in the hospital from all the meds that they gave me. got home spent two weeks recovering. Felt totally normal. Had a totally normal week of doing things. Week after starting napping more not like a considerable amount more. Suddenly one night sitting at dinner I got really hot, dizzy and nauseous. Woke up next day with the worst fatigue. There’s been good days and bad days. I’ve been pretty comfortable as long as I stick to my bed, going to bathroom, and eating. Tried starting some new supplements my dr recommended. Crashed again. Haven’t been able to stabilize. Don’t leave my bed at all now. Can’t stand or swallow.
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That reddit thread is quite the roll call of supplements and actions that people are suggesting:
rest, benzodiazepine, ice-packs on neck, anti-histamine, Pepcid, propranolol, LDN, valium, protein smoothies, ibuprofen, NAC, dextromorphan, creatine, theobromine, audiobooks, motherwort, omega 3, ashwaghanda, lemon balm, linden, LDN again

And that's just 4 hours since the OP posted! All posted with good intent I am sure, but so many posted with high confidence that these things help. We have no idea about what helps, it's such a shame.

For example, I personally think the ibuprofen might help, even if just with making things more bearable, and it's something we could have had a trial of - does it reduce the severity of PEM? But, we don't even know that.
 
Options for gentle dentist treatments that might be helpful to know for very severe pwME:
TL;DR: Geriatric dentist offered help during bedside visit for dental problems in bedbound pwME

I'm very severe and bedbound and met a dentist who is very knowledgeable about geriatric dentistry.

He recommended using Tooth Mousse by GC International to gelp remineralize the tooth enamel after meals. This to aid cavity prevention.

It was developed to help kids with "chalky teeth" and he said he'd used it to good effect in geriatric patients in retirement and care homes who have trouble with regular dental hygiene.

As an aside, he offered me alternative treatments feasible at my home to either drilling/regular filling or tooth extraction. Not all would be viable long-term but having options at all was a huge relief.

I lost a filling a year ago and have a cavi6in another tooth that need treatment.

He proposed to a) cleanse and disinfect the site of the broken filling and seal it with fluoride lacquer. This would have to be regularly reapplied by caretakers. b) to use colloidal silver to disinfect the broken filling and seal it, either temporarily with fluoride lacquer or long-term with dental cement. c) to use atraumatic dental procedure to clean the site of the damaged filling and possible additional cavities with handheld tools (not power tools) and seal the cavity with dental cement.

The latter is a technique and material commonly used in South American (rural?) dentistry. It doesn't require a mobile treatment unit with dental suction system to properly bind (as do more modern components).
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Reddit link
 
I found this thread interesting because the study (Omega3 for biopsychosocial stuff) has all the same issues that we are used to and criticize, while articles get regularly published there promoting things like exercise being beneficial for this and that, sometimes several per week, and they are completely lacking in any of this criticism, and yet they are nearly identical in their issues.



Same with the skeptics sub-reddit. It's amazing how what one believes can completely change the exact same set of issues. To someone who has no beliefs, I don't even really understand the concept, it all feels so damn weird. And yet I am technically the weird one in not having beliefs.
 
I feel like the selection bias of what gets heavily upvoted on r/science is really strong and fits a very particular worldview / demographic.

IIRC the case study for psilocybin (“magic mushrooms”) reporting like one positive case in long covid got a TON of attention while other potentially more interesting and impactful and actually methodologically rigorous things were ignored.
 
Utsikt said:
I’ve taken Omega3 capsules. You can tell that you’ve taken them based on the taste of your breath afterwards - it’s like having eaten certain kinds of fish. I think it’s called «fish burp» or something like that.

Which makes me doubt the blinding.
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I think I take them as well. To be honest I didn’t notice that at all. But I haven’t noticed an effect either. I just take them because it makes my GP and parents happy at no cost to me.
 
Seriously what is wrong with the NHS, or am I just unlucky?
After talking to the GP about how I’m shocked my ME hasn’t been mentioned once since the initial diagnosis and that I am almost entirely housebound due to it. The condition still hasn’t been labelled clearly as “significant” on the NHS app. I talked about my ME at length with the GP recently and the associated symptoms, all of which impact my life to the point I don’t have one. All I wanted was for the record to state “ME - significant” like it does with other issues. Instead of this it says “notes on computer - minor”.
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Moreover, a separate health condition I have with my eye, that although painful when it flares up, pales in comparison to my ME has been listed as “significant”.
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Reddit link
 
Utsikt said:
I’ve taken Omega3 capsules. You can tell that you’ve taken them based on the taste of your breath afterwards - it’s like having eaten certain kinds of fish. I think it’s called «fish burp» or something like that.

Which makes me doubt the blinding.
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They can be plant-based, although I don't know if they are fully equivalent. I tried some and all I remember is a bit of minty taste, which could be added to the control pill.

But it's really funny how all of this goes away the minute it's about something that can't be blinded, then it doesn't matter and in fact can be considered to be even better because, uh, motivation? Funny how it works.
 
Hutan said:
This minimisation/disappearance of a health issue that in many/most cases makes it impossible to work full time and enormously affects quality of life is really remarkable - and a widespread problem.
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Ah but when they examine records and look at statistics based on those records they can happily report that there is no such problem so this clearly can't be true.

It's also kind of funny how decades into continuously growing mental health awareness, budgets and interventions it keeps getting worse, according to what is recorded, and how there isn't much of a record of growing disability isn't associated with chronic health issues but instead with vague mental health ones.

East Asia has always made us sick. Unlike West Asia, of which there is no record. Long live our friends in West Asia.
 
Utsikt said:
I’ve taken Omega3 capsules. You can tell that you’ve taken them based on the taste of your breath afterwards - it’s like having eaten certain kinds of fish. I think it’s called «fish burp» or something like that.

Which makes me doubt the blinding.
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This can differ a lot by brand and batch. Fishy aftertaste could also be due to rancid oils.
 
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