Herbal treatment in Japan for cfs.

Hufsamor

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Hard to believe the study results though, that this herbal formula can get 98 out of 134 ME/CFS patients back to work or school.
By first glance it looks a bit unbelievable, but if you read it this way...
They handpick 134 me/ cfs patients, all with elevated - whatever-it-was-, treated those with the herbs and got 98 of 134 up and going? (Still a bit much, wonder how many of those that are still up and going in a year or two, but if they use target herbs on target problems it should be possible to get some good results?)
 
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Hip

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But returning to school or work might not mean a total cure.
Yes, you can have mild ME/CFS and go to work (perhaps only part time work).

Without knowing the severity of the ME/CFS patients before treatment, it's not possible to gauge the efficacy.

Some studies use relatively healthy ME/CFS patients, or very mild patients with chronic fatigue (but not necessarily ME/CFS). They then get a high success rate, because chronic fatigue may be easier to treat than true ME/CFS.


I was recently informed by an Italian ME/CFS patient that the Italian ozone researcher Umberto Tirelli uses this dubious practice: his ME/CFS studies are done mostly on very mild patients without cognitive impairment (who may not even have ME/CFS).
 
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I was recently informed by an Italian ME/CFS patient that the Italian ozone researcher Umberto Tirelli uses this dubious practice: his studies are done mostly on very mild patients without cognitive impairment (who may not even have ME/CFS).
That was me for decades. Mild. Worked full time. Did not have major PEM events or neurological issues that were so intense. I didn't have cognitive impairments.

All those criteria in use: they didn't exist. So I simply had: some type of Chronic eppstein Barr...and I'd have episodes of "flu like" and would get woefully run down.

But not after a hike, or a dog walk.

So my condition intensified. The first intensification was: Menopause. And the sleep troubles. So most menopausal women- have troubles sleeping. My landlady is outside wiht a flashlight at 4 am. Yet she has no Chronic fatigue.

So when sleeping is supposed to cleanse the brain, only now its not. More symptoms intensify.
 
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They then get a high success rate, because chronic fatigue may be easier to treat than true ME/CFS.
Obviously this illness degrades the body over time. Figuring out how to ID EARLY ME CFS, and how to treat it before the body becomes so literally worn down, would be a GREAT Plan.
 
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Hard to believe the study results though, that this herbal formula can get 98 out of 134 ME/CFS patients back to work or school.
I was thinking that perhaps they were diagnosed based on the Fukuda criteria and therefore the the group could have a lot of people with ME/CFS-like illnesses (As PEM is not mandatory in Fukuda). However, it looks like Fukuda criteria was only published couple years after the herbal treatment study.
 

Hip

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I was thinking that perhaps they were diagnosed based on the Fukuda criteria and therefore the the group could have a lot of people with ME/CFS-like illnesses
Other factors could be that the study used patients just recently diagnosed with EBV post-viral fatigue. One study found that for people with post-viral fatigue after mononucleosis, 69% of those recovered after 2 years or earlier.

So if your study included lots of EBV ME/CFS patients who have only had the illness for less than a year, you can expect a high percentage of those people to recover naturally, even without treatment.



There was another Japanese study recently (2019) which claimed a 56% ME/CFS recovery rate just by applying TENS machine-type electrical stimulation to the stiff neck muscles of ME/CFS patients, along with heat from an infrared lamp. See this thread for some discussion. Again, this recovery rate seems very implausible.

However, I think it is worth trying these therapies; my philosophy is that it's better to try something rather than not try, as you never whether something might help unless you try it.
 

wabi-sabi

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However, I think it is worth trying these therapies; my philosophy is that it's better to try something rather than not try, as you never whether something might help unless you try it.
I can see the merit of this approach, but I also want to know what are the potential harms before starting a treatment. I don't have unlimited funds to spend on herbal medications or other supplements. And that's setting aside any side effects from the treatments themselves that may be harmful.
 

Hip

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I can see the merit of this approach, but I also want to know what are the potential harms before starting a treatment. I don't have unlimited funds to spend on herbal medications or other supplements. And that's setting aside any side effects from the treatments themselves that may be harmful.
There are very few ME/CFS treatments that have long-term potential harms; most of the ones that do are major medical interventions.

Off the top of my head, the following carry some risk: IVIG (sometimes has adverse effects), heavy long-term antibiotics (for those who think ME/CFS is due to stomach bacteria; or for Lyme), oxymatrine (can occasionally trigger rheumatoid arthritis in those with autoimmune tendencies), Abilify (at full doses at least, antipsychotics can substantially increase the risk of type 2 diabetes, and may cause permanent extrapyramidal symptoms), Imunovir (some people report becoming permanently worse).

Of course, many treatments can have side effects which make you feel worse; but in most cases those side effects disappear as soon as you stop the treatment. In my case, I unfortunately find that lots of treatments worsen my mental health, forcing me to stop them, even though the treatments themselves may have been of major benefit to my ME/CFS, had I been able to follow them through.



Finances are another issue, and it is good to try to come to a judgement beforehand on how likely a treatment is going to work for you, and limit your experiments to treatments where you feel there is some chance of success.

If several ME/CFS patients have benefited from a treatment, then that usually is a good indication that it may be worth trying.
 
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I can see the merit of this approach, but I also want to know what are the potential harms before starting a treatment. I don't have unlimited funds to spend on herbal medications or other supplements.
Taking into account the fact that those with me/cfs can have a bad reaction to almost anything, any treatment is going to come with a risk. Starting with a small dose (say 25% of the recommended dose) might reduce the risk.
 

Booble

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Taking into account the fact that those with me/cfs can have a bad reaction to almost anything, any treatment is going to come with a risk. Starting with a small dose (say 25% of the recommended dose) might reduce the risk.
THIS.