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I now have no doubt
that atorvastatin has been successful in helping me overcome ME/CFS, which I
have had since 1994.
I would like to emphasise the fact that all this
happened accidentally. When I started taking atorvastatin, no one had any idea
that it could help ME/CFS. It took me a lot of research on the net to find a
possible explanation for my recovery. I was fortunate to find an article by Dr
Jacob Teitelbaum. This was posted in the Latest ME/CFS Research forum recently.
(See https://www.psychologytoday.com/au/...ng-new-discovery-in-treating-cfs-fibromyalgia)
Remember that there hasn't even been a clinical trial of this treatment
approach (to the best of my knowledge). So it is
unknown how other people will react, and it is not known if the treatment will
be harmful to some people.
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I now have no doubt
that atorvastatin has been successful in helping me overcome ME/CFS, which I
have had since 1994.
I am a bit confused:
in your recent intro post, you said that you have moderate ME/CFS. But
here you are stating that you have recovered.
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I am a bit confused:
in your recent intro post, you said that you have moderate ME/CFS. But
here you are stating that you have recovered.
Yes, I did have
moderate ME/CFS in September. I am improving daily, but there is obviously a
long way to go to experience complete healing. At the moment, I have a lot of
muscle fatigue in the legs probably because my muscles aren't used to doing as
much as they have been doing.
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It's far too early for
everyone here to go out and try it. It might be one of those things that
corrects a medical abnormality unique to you, which in turn affects your ME. I
have two things that work great for me, but don't seem to work on anyone else.
I don't recall anyone else here reporting that statins helped their ME.
Some people just get lucky, and find something that works well for them, but
them alone. Even if it only works for you, it still might help a researcher ask
the question 'Why would this help someone with ME?' and maybe that will lead to
a new line of research.
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Yes, I did have
moderate ME/CFS in September. I am improving daily, but there is obviously a
long way to go to experience complete healing. At the moment, I have a lot of muscle
fatigue in the legs probably because my muscles aren't used to doing as much as
they have been doing.
Did you start taking
atorvastatin in the last few months then, and you think that's what led to the
big improvement in your ME/CFS over the last month?
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Even if it only works
for you, it still might help a researcher ask the question 'Why would this help
someone with ME?' and maybe that will lead to a new line of research.
I am hoping that a
researcher will find some answers to why it has helped me. There is extremely
little information around, apart from Dr Jacob Teitelbaum's article that I
posted earlier.
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Did you start taking
atorvastatin in the last few months then, and you think that's what led to the
big improvement in your ME/CFS over the last month?
I had a stroke on 7th
September. I was given atorvastatin in hospital to reduce my chance of having
further strokes. As far as I can figure out, it is the only drug that I have
ever taken that is theoretically capable of having some effect on the ME/CFS
disease process.
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As far as I can figure
out, it is the only drug that I have ever taken that is theoretically capable
of having some effect on the ME/CFS disease process.
Hardly proof of
connection. The two things that work well for me don't have any known
theoretical reasons for working. Many (most?) things that did have theoretical
bases for working on ME either didn't affect my symptoms or made them worse.
It's hard to have a theoretical basis for a treatment for ME when we still
don't know what ME actually is. So far it's mostly
guesses.
Maybe your stroke triggered some change that caused the improvements. I'm not
saying that the statin couldn't be responsible; just that the evidence for it
is fairly weak. If you went on and off the drug several times, and your
symptoms correlated with the drug level, that would be
reasonably strong evidence.
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I had a stroke on 7th
September. I was given atorvastatin in hospital to reduce my chance of having
further strokes.
Interesting, so the
improvements in your ME/CFS appeared ever since you started that drug. Can I
ask, once you started the atorvastatin, how long did it take before you began
to notice improvements in your ME/CFS?
I see in your intro post you also mention that your ME/CFS is ' "chronic
and relapsing" meaning that I have been relatively well followed by
periods of moderate to severe symptoms'. Autoimmune diseases are often
relapsing-remitting, so perhaps your ME/CFS might be autoimmune in nature.
I found this paper which observed that in brain-injured
mice, atorvastatin increases T-reg cells (which may help suppress
autoimmunity), reduces pro-inflammatory classical (M1) microglial activation in
the brain, but increases the beneficial brain-repairing alternative (M2) form
of microglial activation.
And I mentioned earlier in this post that atorvastatin is mildly antiviral
for cytomegalovirus. Would you know if you have any chronic active viral
infections (have you been tested for viruses), and in particular if you have
cytomegalovirus?
Did the stroke had any negative effects on your brain, by the way? There is
some research showing that hyperbaric oxygen can help in terms of brain repair
after stroke — see this post.
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Interesting, so the
improvements in your ME/CFS appeared ever since you started that drug. Can I
ask, once you started the atorvastatin, how long did it take before you began
to notice improvements in your ME/CFS?
In a few days.
Would you know if you
have any chronic active viral infections (have you been tested for viruses),
and in particular if you have cytomegalovirus?
I don't know if I had any chronic active viral infections, as I haven't been
tested for viruses. However, I had severe glandular fever that led to ME/CFS.
Suspect that the Epstein Barr virus has been bothering me ever since.
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However, I had severe
glandular fever that led to ME/CFS. Suspect that the Epstein Barr virus has
been bothering me ever since.
Were you tested for
EBV at the time of your glandular fever? Although glandular fever is caused by
EBV 90% of the time, more rarely it can be caused by cytomegalovirus.
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In a few days.
That seems far too
fast to be due to an antiviral effect. In ME/CFS, antivirals take many months
to begin to show effect. So for atorvastatin to start
working within days suggests the benefits you are getting from it do not come
from any antiviral effect, but may come from some other effect this drug has.
Just what that effect might be is anyone's guess.
By the way, since you say your ME/CFS follows a relapsing-remitting course, how
are you distinguishing the improvements in your ME/CFS symptoms obtained from
atorvastatin, from the improvements in symptoms you spontaneously get every now
and then via the relapsing-remitting course of your ME/CFS?
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By the way, since you
say your ME/CFS follows a relapsing-remitting course, how are you
distinguishing the improvements in your ME/CFS symptoms obtained from
atorvastatin, from the improvements in symptoms you spontaneously get every now
and then via the relapsing-remitting course of your ME/CFS?
I was struggling with
a consistent fatigue pattern, and resting/ sleeping 13 hours in every 24
period. There was no hint of any improvement for a few years prior to September
2019. In fact, I seemed to be getting worse. That all changed a short time
later. I have never had such a rapid improvement in my condition.
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@Hopefulone ,
your story is worth sharing, as it might help someone else, but lots of ME/CFS
patients have low cholesterol.
And lot's of people don't tolerate statins because of
muscle side effects:
"The reported incidence varies greatly, ranging between 5% and 29% with
milder symptoms being common and, the rare, more serious form, rhabdomyolysis
being far rarer with an incidence of approximately 1 in 10,000 "
...
"Some clinicians proceed to muscle biopsy and electron microscopy in
severe cases. A case series of 279 biopsies from patients with statin myopathy
show a 24% incidence (n = 67) of mitochondrial dysfunction on
either histochemistry and/or electron microscopy [27]. Ten percent (n = 29) had
abnormal respiratory chain enzyme activity"
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your story is worth
sharing, as it might help someone else, but lots of ME/CFS patients have low
cholesterol.
The only reason that I
am on atorvastatin is that the hospital said that I was at high risk of another
stroke. I don't know what my cholesterol level is, but it was never a problem
before.
And lot's of people don't tolerate
statins because of muscle side effects:
"The reported incidence varies greatly, ranging between 5% and 29% with
milder symptoms being common and, the rare, more serious form, rhabdomyolysis
being far rarer with an incidence of approximately 1 in 10,000 "
...
I am intending to
reduce my dosage because it is at 80mg. I understand this is quite high and
detrimental in the long term.
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I am intending to
reduce my dosage because it is at 80mg. I understand this is quite high and
detrimental in the long term.
sorry, I didn't mean
you should change your dosage, it's fine if you can tolerate it and if you get
benefit from it.
I just meant to make other people aware that it is not always a safe drug.
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The only reason that I
am on atorvastatin is that the hospital said that I was at high risk of another
stroke. I don't know what my cholesterol level is, but it was never a problem
before.
Aside from its
seemingly clear benefit to ME/CFS in your case, also be aware of it's numbers needed to treat (NNT)
for stroke prevention:
Statins Given for 5
Years for Heart Disease Prevention (With Known Heart Disease)
83 for mortality
In Summary, for those
who took the statin for 5 years:
Benefits in NNT
·
1 in 83 were helped
(life saved)
·
1 in 39 were helped
(preventing non-fatal heart attack)
·
1 in 125 were helped
(preventing stroke)
Harms in NNH
·
1 in 100 were harmed
(develop diabetes*)
·
1 in 10 were harmed
(muscle damage)
*The development of
diabetes is one such unanticipated harm found in a recent large study and it
seems likely therefore that this applies to the data above, although this is a
best guess.
I highlighted the NNT
for stroke in red. That means out of 125 patients who take statins for stroke
prevention, in only 1 patient it actually did. But 124 actually had to take it
without benefit in this respect. Nothing is known much beyond 5 years, since
most RCT trials don't last longer.
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I have never had such
a rapid improvement in my condition.
Sounds great, Hopefulone, I hope your improved health continues.
I've got a few packets of atorvastatin here (as my mother was prescribed it,
but she never used it). So I might try this drug
myself. I also happen to have chronic active cytomegalovirus infection.
Do you happen to know whether your stroke was an
thrombotic stroke (caused by a blood clot) which is the most common, or a
hemorrhagic stroke (caused by a burst blood vessel)?
For thrombotic stroke, the supplement rutin (rutin comes from apples) may be effective for prevention,
as it helps prevent blood clots. See this article.
Bromelain is also something to look at for blood clot prevention.
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I am intending to
reduce my dosage because it is at 80mg.
That will be a useful
test to see if the drug is responsible for the improvement, and whether it's dose-dependent.
A lack of change won't necessarily disprove the connection, since some
treatments aren't dose-dependent, but a positive result might interest
researchers. If you could verify that atorvastatin does work for your ME, the
drug company might fund some research.
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Sounds great, Hopefulone, I hope your improved health continues.
Thanks, and I hope
that I am not the only one that might continue improving
I've got a few packets
of atorvastatin here (as my mother was prescribed it, but she never used it). So I might try this drug myself. I also happen to have
chronic active cytomegalovirus infection.
Please consult your
doctor before taking atorvastatin, as it could have adverse side effects.
Do you happen to know
whether your stroke was an thrombotic stroke (caused
by a blood clot) which is the most common, or a hemorrhagic stroke (caused by a
burst blood vessel)?
My stroke was a
thrombotic stroke (caused by a blood clot).
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Hi @Hopefulone is the statin still giving improvement?
You probably mentioned it, but how long were you taking it before you noticed
an effect?
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@knackers323, she has other threads with this same or similar topics. It may
be that some of those might give an update of her use of the statin drug.
Just saying, in case that might be helpful for you.
<< The tree fell
but continues to reach to the sky and survive. That's us.
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... is the statin
still giving improvement?
You probably mentioned it, but how long were you taking it before you noticed
an effect?
Yes, the statin is
still helping me improve in subtle ways. In fact, I no longer consider myself
to be noticeably affected by ME/CFS.
Recently I have found that my sleep quality has improved, and my sleep/wake
cycle has returned to normal.
I was taking the statin for a few days to about a week before I noticed an
effect.
For more thoughts about all this, please refer to:
https://forums.phoenixrising.me/thr...he-antiviral-qualities-of-atorvastatin.78886/
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This is quite
interesting as there's been a lot of buzz recently about the effects of Statins
on inflammation. One of the theory's doing the rounds is that the host of
symptoms we encounter is being caused in some part by inflammation of the brain
(Jarred Younger's research).
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... inflammation of
the brain
I think that brain
inflammation is certainly present, and the old name myalgic
encephalomyelitis is a pretty accurate term. See:
In the video Dr Jarred Younger talks about his findings that includes elevated
brain temperature that is enough to cause many symptoms. In the past, I have
often felt slightly feverish although my temperature reading was normal.
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hello everyone, i have high blood pressure and fast heart beat and taking
meds for it, my doctor also gave me atorvastatin but i
wasn't taking it, but i read somewhere that it helps
a lot, so i start taking it and i
can say it was great to the point i thought my
problem was cured, but it didn't last too much, maybe 2 or 3 weeks i was feeling good but then my ME/CFS back again, im still taking it for my heart safety though.
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... but i read somewhere that it helps a lot, so i start taking it and i can say
it was great to the point i thought my problem was
cured ...
Thanks for telling us
about your experience with atorvastatin. I feel that although it can help ease
symptoms, it is still unknown why only a minuscule number of ME/CFS sufferers
respond favourably to it. Clearly more research is
urgently needed in this area.
I am really pleased to say that I am still in remission, but find it difficult
to explain why this has happened. I encourage you to read all the posts that I
have written since September last year. Perhaps atorvastatin needs to be
combined with other drugs and supplements in order to be a truly effective
treatment for ME/CFS?
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hello everyone, i have high blood pressure and fast heart beat and taking
meds for it, my doctor also gave me atorvastatin but i
wasn't taking it, but i read somewhere that it helps
a lot, so i start taking it and i
can say it was great to the point i thought my
problem was cured, but it didn't last too much, maybe 2 or 3 weeks i was feeling good but then my ME/CFS back again, im still taking it for my heart safety though.
@Abdallah what dose were/are you taking?
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I have a crazy
theory @Hopefulone Did you receive Thrombolysis? and is it possible that you
suffer from Hughes syndrome? maybe the thrombolysis (or the atorvastatin
itself) helped with that syndrome, reduced the strain on your immune system and
caused a remission. Just a wild thought as I do believe ME is highly affected
by preexisting conditions and maybe even triggered by such conditions.
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I agree with xebex that it's more likely that the drug reduced some
other condition, which in turn had been making the ME symptoms worse. If a
treatment works well for a very small percentage of patients, but not at all
for others, then it's logical for it to be due to an abnormality in those
patients, and that combining with other drugs or supplements won't make it work
for patients without those specific abnormalities.
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Just a wild thought as
I do believe ME is highly affected by preexisting conditions ...
Although I agree with
the concept that ME is affected by preexisting conditions, I was apparently
healthy before being diagnosed. Therefore, I have never had Hughes syndrome nor
have I received thrombolysis.
As far as preexisting conditions go, I feel that genetics influence the chances
of someone succumbing to ME/CFS. There is annecdotal
evidence that ME/CFS can run in families. In my case, my grandmother had ME/CFS
although no other relatives have been affected to the best of my knowledge.
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I was a competitive
athlete before getting sick with apparently no pre existing conditions. None have yet been
identified however it is possible to have silent conditions and if you had had
a stroke they often thrombolyse you, I wonder why you
weren’t offered that?. Hughes syndrome is something to
look into if you have suffered stroke I’m also
surprised they haven’t investigated that. I’m not saying you don’t have ME I’m
saying that finding other conditions and treating them can often greatly help.
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Are you currently
taking statins? If so, at what dose?
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Although I agree with
the concept that ME is affected by preexisting conditions, I was apparently
healthy before being diagnosed. Therefore, I have never had Hughes syndrome nor
have I received thrombolysis.
As far as preexisting conditions go, I feel that genetics influence the chances
of someone succumbing to ME/CFS. There is annecdotal
evidence that ME/CFS can run in families. In my case, my grandmother had ME/CFS
although no other relatives have been affected to the best of my knowledge.
Hi,
may I ask, did you have a higher urine output before taking the medication that
got normalized or better afterwards?
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Are you currently
taking statins? If so, at what dose?
Yes, my dosage has
been reduced from 80mg to 40mg of Lipitor (atorvastatin) per day. Still find it
difficult to believe that I am in remission with no ME/CFS symptoms.
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...did you have a
higher urine output before taking the medication that got normalized or better
afterwards?
My urine output is
unchanged, and I consider it to be normal.
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I have been on
atorvastatin for many years with no effects on my ME/CFS noticed.
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I ended up bumping on
this thread while looking specifically for information on statin therapy. It
seems to be gaining some traction in Long Covid. They briefly talk over about
it here:
Statins act on the CX3CL1/Fractalkine pathway, which could be why they
might be benefiting you. That chemokine can induce monocyte infiltration. And apparently they found Covid protein in monocytes, which may
continue being carried around across the body. This leads to
hyper-inflammation and endothelial damage. That can be true for other
viruses as well.
The problem is that statins have plenty of side-effects, but there are not many
alternatives right now. There is one drug in Phase 2 trial which is may work
better: KAND567
Last edited: Jun
11, 2021
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Statins act on
the CX3CL1/Fractalkine pathway, which could be why they might be
benefiting you.
Thank you very much
for this intriguing and ground breaking news! I have always felt that there was
a definite medical explanation for my remission, despite the fact that little
evidence has been published until now.
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Thank you very much
for this intriguing and ground breaking news! I have always felt that there was
a definite medical explanation for my remission, despite the fact that little
evidence has been published until now.
Thank you for
reporting your treatment. I think that validates statins as a possiblity, even though it may not work for everyone.
We still have a long way to go to be able to identify CFS subgroups. Jarred
Younger (Neuroinflammation researcher) published an interesting video on those:
Apparently one of the
patient groups had their fatigue levels extremely correlated to Fracktalkine serum levels. It really makes me wonder what
would happen with their fatigue when you disrupt this pathway.
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I am reconsidering my
previous statement that atorvastatin didn't help me. I never noticed any short term effects from it, but during the time I have been
taking it, I have enjoyed improved health. I started the atorvastatin around
2005 and switched to rosuvastatin 20 mg about 3 years ago. I can say that I
noticed no immediate improvements when I started the statins, but in the more
than 15 years since I started them my health has generally improved. The
changes have happened so slowly that I have barely noticed, and I have tried
many things over the years. At this point I am only taking Equilibrant along
with the statin and warfarin I am on.
I am far from being considered healthy, but have very slowly improved over time
to where I am doing things today that I wouldn't have considered a few years
ago. Is this due to the statins? Did they turn things around for me? Would I
have continued to get worse if I hadn't needed the statins?
If you are looking for quick results I don't think
that they work, but they may provide some relief over the long term if you are
patient. My new answer would be " I don't know".
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Did they turn things
around for me? Would I have continued to get worse if I hadn't needed the
statins?
That's one of those
questions that is really hard to ever answer. There are too many other factors
involved to know which one was responsible. For treatments with short-term
responses, you can test them repeatedly for statistical robustness. Not so with
one-time experiments. We just have to make a judgement based on what
information we do have.
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Have been following
the use of 3 statins. Pravastatin, Atorvastatin and Rosuvastatin. Not only do
they inhibit the Fracktalkine receptors, they reduce
the production of RANTES. RANTES is involved in signalling
which allows for perpetual inflammation. Out of 7 that I know who have tried
it, 6 have marked improvements and one none. So worth looking at for sure. It's
easy to obtain and inexpensive and might help with another 15 to 30%
improvement.
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The use of statins
results in an increase in Acetyl CoA involved in the TCA cycle and ATP
production. Is this why fatigue levels are lowered?
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Have been following
the use of 3 statins. Pravastatin, Atorvastatin and Rosuvastatin. Not only do
they inhibit the Fracktalkine receptors, they reduce
the production of RANTES. RANTES is involved in signalling
which allows for perpetual inflammation. Out of 7 that I know who have tried
it, 6 have marked improvements and one none. So worth looking at for sure. It's
easy to obtain and inexpensive and might help with another 15 to 30%
improvement.
I haven't heard about
statins blocking RANTES, just fracktalkine. Is it
effective at that?
Dr. Patterson has been prescribing a statin along with Maraviroc (a RANTES
inhibitor), to cover both cytokines. If statins are able to inhibit both, there
should not be a need for another medication.
Niacin also seems to play an important role in inhibiting these, as pointed out
by this paper: https://pubmed.ncbi.nlm.nih.gov/19781706/
Coincidentally, it also plays a key role in lowering cholesterol, and has been
used a lot by Covid Long Haulers.
But then again, not sure how effective it is. If niacin worked well enough,
nobody would ever get statins prescribed to them.
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If niacin worked well
enough, nobody would ever get statins prescribed to them.
There are plenty of
examples where an in vitro experiment using ridiculously high levels of
something shows a slight benefit, and someone else spins the product as a
miracle treatment, even though it has no noticeable effect in vivio at non-hazardous levels.
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I haven't heard about
statins blocking RANTES, just fracktalkine. Is it
effective at that?
Dr. Patterson has been prescribing a statin along with Maraviroc (a RANTES
inhibitor), to cover both cytokines. If statins are able to inhibit both, there
should not be a need for another medication.
Niacin also seems to play an important role in inhibiting these, as pointed out
by this paper: https://pubmed.ncbi.nlm.nih.gov/19781706/
Coincidentally, it also plays a key role in lowering cholesterol, and has been
used a lot by Covid Long Haulers.
But then again, not sure how effective it is. If niacin worked well enough,
nobody would ever get statins prescribed to them.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5380490/
What we need is the effect of statins on CFS patients before and after
treatment with a statin.. this is happening currently
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5380490/
What we need is the effect of statins on CFS patients before and after
treatment with a statin.. this is happening currently
That is the effect on
RANTES
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That is the effect on
RANTES
https://pubmed.ncbi.nlm.nih.gov/25307674/
Above article suggests that Rosuvastatin reduces RANTES, am aware of 3 persons
showing benefits with this