Poll - In your opinion, is it worth experimenting with therapeutics of unknown efficacy?

In the absence of evidence for any therapeutics for ME/CFS, is it better to...

  • not attempt any therapeutic at all (inclusive drugs, supplements, behavioural changes except Pacing)

    Votes: 8 16.3%

  • experiment with different therapeutics ( at whatever tolerance for risk and cost you deem fit)

    Votes: 27 55.1%

  • My opinion is not properly represented in these choices

    Votes: 14 28.6%
  • Total voters
    49
cassava7 said:
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.
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Thank you for your coherent reply. Sorry you're health is so poor.

As I read your reply, I thought - have I suggested ME/CFS is untreatable? The answer is that I don't think we've had access to much of what science can deliver today e.g. at last a GWAS study is underway. Another comment that comes to mind is "they (scientists) keep looking in the same places and finding nothing" - as in they should look elsewhere. We need funding of course and avoiding wasting the limited money available e.g. un-blinded studies with subjective outcome criteria.
I also think that there may be options to identify treatments which improve quality of life in the short term - like improving sleep quality ad thereby functioning. One of the reasons I like this thread* i.e. as a way of identify indicators of functioning/quality of life - to assess interventions.

Thank you again for your reply.

*https://www.s4me.info/threads/which-outcome-measures-are-most-important-for-clinical-trials.29829/
 
Snow Leopard said:
If you don't try anything people accuse you of not wanting to get better.
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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.

In the UK, GET was enforced rather than offered i.e. re access to social security benefits.
 
bobbler said:
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.
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Thank you.
 
Snow Leopard said:
If you don't try anything people accuse you of not wanting to get better.
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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.

I'm always happy to consider inaction as a possible solution to any problem. I simply don't have the time or energy to gamble what remains of my health on unproven treatments, and I absolutely hate giving money to quacks. I occasionally make a token effort at trying something that doesn't cost much and won't do much harm, but I've found that pacing and steadfast grumpy cynicism have served me as well as anything.
 
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.
 
The FDA approved drugs for FM are a joke. The expert 2016 randomized control study of pregabalin (a gabapentin type drug) yielded this result:

441 FM patients.
29 achieved 30% or more pain relief after several months. That's 6.6% of FM patients. So your doctor will push this drug for FM pain, without telling you these stats.

And further, the side effects of pregabalin are not benign, especially for the over 65 crowd: somnolence (sleepiness), dizziness (fall risk) and weight gain (often over 30 lbs).

In Europe, where smarter heads prevail, these drugs are not approved for FM.

I am going to try LDN. The risk profile is low. Efficacy may or may not be as high as pregabalin for pain (6.6% of patients). LDN is easy to access in the US.
 
I am always trying something, usually low risk low investment low energy things that seem to fit with my history and symptoms, all based on my own calculations with no professional input.

I have been keen to try various supplements and low risk obtainable medication options but this forum usually convinces me not to, which I think is invaluable - goodness knows what risks I might have taken (and money wasted).
 
Been there, done that, got the t-shirt. About $10k AUD worth of t- shirt.

I had a bad reaction to Mg infusions with plummeting blood sugar. It was quickly fixed by a slice of plain cake. The craving for plain cake was intense. Luckily there was a cake shop close to the doctor's office.

I've had bad reactions to antidepressants. When you can barely function cognitively, antidepressants are a terrible choice.

Far and away the worst experience was severe anxiety after a few days of very small doses (half the smallest tablet) of pregabalin. After that I looked at some Facebook pages about people who have become addicted and are suffering appallingly trying to get off this drug.

No more experimenting for me!
 
oldtimer said:
I had a bad reaction to Mg infusions with plummeting blood sugar.
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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.
 
Arnie Pye said:
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.
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I take magnesium citrate to help with muscle pain and for better quality sleep. It works very well for me and I get worse within a day or two forgetting to take it. If I run out and go a week or two I get significantly worse. For sleep I have found it works even better combined with an oil based vitamin D tablet.

So for anyone suffering from nighttime muscle pain cramps or insomnia or anxiety (it seems to relax mind as well as muscles) I’d rate it as a cheap option worth trying because the body needs a lot of magnesium so you probably won’t be at risk of an overdose. It is a laxative though so you have to plan for this and test your tolerance. Also look up maximum dosage 400 something other wise you’ll really mess up your body’s ratios. Still magnesium can be difficult to absorb in supplemental form, well like any supplement which is why dietary intake is safer.

I rate magnesium baths even more highly for effectiveness and of course enjoyment. But it’s difficult/dangerous to get in the bath when you’re really unwell.
 
IanMcPhee said:
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.
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I’m imagining a whole household now busily adulterating food, and switching labels on duplicated groceries, and keeping coded logs, all to sustain triple-blind trials. Admirable.
 
Many years ago with then recently diagnosed FM, a researcher and sufferer said magnesium tablets would help.

I tried and all I got was a lot of diarrhea and no relief whatsoever of muscle pain.

To my mind, every day is a clinical trial, trying to tease out cause and effect. My main problem is I so easily overdo using my muscles and also that the pain has gotten worse over the last 5 years (aging? who knows).

It's hard when you're in pain to relax and go full mindful, doesn't happen. Meds help but not always enough.

I can't wrap my head around my real limitations. Yesterday I wanted to see out my window, so I washed it like a fool and paid the price. Sunday I did 4 reps of mild knee arthritis exercises and had strong muscle spasm-like pain continuously for 2 days and constant muscle relaxants, heat, massage.

I know better but often I just "want to be normal" and pretend.
 
Arnie Pye said:
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.
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This was almost 30 years ago. The doctor was respected integrated medicine physician who treated CFS and FM at that time.

I searched magnesium intravenous infusion in Australia and found that it is used in regular pain clinics as well as other types of clinics.
I don't know whether to laugh or cry about this one. Apparently iv magnesium is a brain and liver cleanser.
https://lacure.com.au/iv-therapy

If you've drunk yourself silly you can add this to your liver and brain magnesium infusion.

"ADD-ON RECOVERY IV THERAPY > The Socialite
For those who have had too much fun or over indulgence, The Socialite add-on can bring you back to your best. Add to one of our premium drips, alternatively it may also be added to a solo drip. Help your body to banish dehydration, nausea and headaches. Great for travellers and people attending conferences. RECOMMENDED ADD-ON TO >
Brain and Liver Cleanser Premium Drip"

There's no mention about what this miracle hangover substance is.
A solo drip is only $179 (sounds better than $180 I presume)
Your Premium Drip is a bargain at only $279.
How is this quackery allowed!
 
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Thank you @JemPD & @Shadrach Loom . Dad and I did sometimes run the trials for each other. They were 1.5 blind trials, on account that whoever was running the trial could actually remember if it was a dose week or placebo week!

The actual reason I started doing something like proper trials, is I've seen so many people put so much hope, energy and money into treatments that don't work, but they persist with them out of fear of getting worse if they stop. Totally understandable with the position we're all in, and also easy to fall into without realising. I believe there's a proper term for the behaviour (?) but my brain is to tired to recall. Something similar to the sunk cost fallacy.
 
I’ve stopped experimenting.

As many others I’ve tried variouse things the first few years of illness. But nothing really helped. Worse, weird and sometimes adverse effects happened. And I also can get weird side effects or over reactions to ordinary treatments for non-ME issues.

Don’t dare try things now. I rather do what I can to perserve what health I have left. It’s to the point any non-ME issue is treated as lightly as possible. Because ‘that shouldn’t happen’ isn’t really something I’d like to hear again.

And it just makes sense to me, as we don’t know exactly what has gone wrong in our bodies. Any attempt to manipulate our body systems is as likely to make things worse as to help. I’m not comfortable with that risk anymore.

Plus, for me, developing ME has felt like a cascading reaction in the body over time. I personally belive it’s unlikly just one single drug/vitamin/thing is going to fix it. I suspect it will have to be several things in combination, maybe over some time, nudging systems back into balance.
 
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