• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Second study might confirm neuroinflammation in ME subcortical brain

Oliver3

Senior Member
Messages
863
Well I've had Perrin technique. I guess Perrin is more closely in line with Goldstein's theories. But they haven't exactly been proven as root causes of ME.

For me it felt like a lot of very expensive sessions and major hassle to effectively get very little reward out of it at all. Plus you could just take redroot americanus, liver and kidney herbs and some other type of lymphatic cleansers to create the same effect. In my opinion which is not backed up by anything!

But that approach is a lot cheaper and quicker etc.
On a similar note, I've been follow the ivermectin story for covid and long covid.
Lots of people saying in comment sections that the drug has helped them banish long covid. Similarly , the American entrepreneur , Steve Kirsch, says that an SSRI, the name of which escapes me now, but I ca find it if anyone's interested, has been proven to cross the blood barrier and reduce inflammation in covid and long covid.
I just wonder if Ron Davies et Al know about these drugs
 

Rufous McKinney

Senior Member
Messages
13,363
What does anyone think of the Perrin technique Perrin's view that varicosed and malfunctioning lymph is creating a backflow into the lymphatic system in the brain, inflaming and poisoning the brain?

maybe- or conversely, the csf fluid is not flowing properly into the congested gunked up lymph system.

maybe this is just all versions of the same thing.

I use chinese herbs for lymph cleanse, they generally work- the swollen nodes go way down or disappear.
they are gentle herbs, but it seem something about detox and lymph I can;t seem to get to the other side.

I stopped the lymph cleanse again.
 

Oliver3

Senior Member
Messages
863
maybe- or conversely, the csf fluid is not flowing properly into the congested gunked up lymph system.

maybe this is just all versions of the same thing.

I use chinese herbs for lymph cleanse, they generally work- the swollen nodes go way down or disappear.
they are gentle herbs, but it seem something about detox and lymph I can;t seem to get to the other side.

I stopped the lymph cleanse again.
Are you allowed to say what the herbs are rufous
 

Rufous McKinney

Senior Member
Messages
13,363
I use chinese herbs for lymph cleanse, they generally work

I don't happen to have the list of What Are the Lymph Cleanse Herbs.

This is partly tied to the issue that I often do not ask. Because I go to an expert and he puts the formulas together for me. What is in it - is a secondary issue.

I lost my list of the 38 herbs I take in a custom mix for overall Yin deficiency, but the list is missing somewhere in this apartment.

I can often deduce what they are: let me see if I can do any detective work.

In lieu of lymph cleanse herbs : try a proteolytic enzyme and lots of water if you can. the lymph will hydrate, and flow more readily.
 

godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
No I saw someone who was trained by him though. The other thing with Perrin is he can only see patients who are able to get to clinic AND do exercise 4x a day consisting of lymphatic brushing. This is exercise plain and simple. It used to thoroughly exhaust me and as you can imagine I found it very difficult to keep up with after a month.

Of course the patient is then blamed when the treatment doesn't work. When they forgot to book me in at Christmas after 6 months of not really gaining a huge amount I just stopped wasting my time.

So my point is Perrin saw mild patients. This might mean those patients a) responded better to Perrin or b) were in th very early stages of being sick and would recover naturally within a year anyway.

I spoke to the lady at my place and they had almost no moderate to severe patients. It costs about £300 a month so not cheap.
 

godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
Rufous is right. Redroot americanus and pokeroot are two primary lymph node cleansing herbs. They speed up the lymphatics system and detox pathways. I used to take the tincture form regularly. But I've moved on since then. I pursued anti viral herbs instead. That's not to say detox and lymphatics are not important.

Higher doses of thiamine increase blood flow to the brain. I've never combined that with lymphatic cleansers. But in theory this would mimic Perrin and cost you about £50 a month probably more like £30.
 

Oliver3

Senior Member
Messages
863
Rufous is right. Redroot americanus and pokeroot are two primary lymph node cleansing herbs. They speed up the lymphatics system and detox pathways. I used to take the tincture form regularly. But I've moved on since then. I pursued anti viral herbs instead. That's not to say detox and lymphatics are not important.

Higher doses of thiamine increase blood flow to the brain. I've never combined that with lymphatic cleansers. But in theory this would mimic Perrin and cost you about £50 a month probably more like £30.
That's great info, thanks
 

Violeta

Senior Member
Messages
2,944
maybe- or conversely, the csf fluid is not flowing properly into the congested gunked up lymph system.

maybe this is just all versions of the same thing.

I use chinese herbs for lymph cleanse, they generally work- the swollen nodes go way down or disappear.
they are gentle herbs, but it seem something about detox and lymph I can;t seem to get to the other side.

I stopped the lymph cleanse again.
What herbs are you finding helpful for the lymph system?
 

Rufous McKinney

Senior Member
Messages
13,363
I go to a traditional chinese herbalist, trained here in the US. 600 raw herbs in the office there. 100s more in granular dry tea form. Very complex. Personal medicine.

He did not tell me what those particular herbs were. I lost the list of the 38 herbs I take for Yin deficiency. Its here someplace.

So I don' t know at the moment.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
The review paper by Michael Van Elzakker also describes some issues with the use of TSPO for detecting neuroinflammation:
https://forums.phoenixrising.me/thr...-a-critical-review-of-research-methods.76890/
This is a long paper but important as it discusses the advantages and limitations of various radiotracers and targets in quantifying neuroinflammation.

Emerging PET Radiotracers and Targets for Imaging of Neuroinflammation in Neurodegenerative Diseases: Outlook Beyond TSPO. Narayanaswami et al. Mol Imaging (2018)

And here is a new review paper on TSPO-binding PET tracers:

Recent developments on PET radiotracers for TSPO and their applications in neuroimaging (Zhang et al., 2021)
https://www.sciencedirect.com/science/article/pii/S2211383520306894

Graphical abstract:
1626821645674.png
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
There is another important aspect to the connections between the thalamus and the cortical brain- the aspect of alert consciousness. There is recurring stimulation from the thalamus to the cortical brain and then back to the thalamus, forming a loop. This recurring stimulation through the loop leads to "thalamo-cortical oscillations". Some of these oscillations can be roughly recorded using an electroencephalogram (EEG) as "alpha frequency waves". These alpha frequency waves in EEG typically represent a state of alert consciousness. If there is a problem with the thalamo-cortical oscillations, it may be hard to maintain a state of alert consciousness. (brain fog?)

EEG studies in ME have had a hard time documenting specific abnormalities. But one study noted that "In the eyes closed condition, peak alpha frequency (the frequency between 8 to 13 Hz at which the greatest amount of energy was observed) correlated negatively with the 'fatigue today' rating." This means that patients who reported more fatigue had slower alpha-frequency waves.[1] And a 2014 conference presentation "found decreased [peak alpha frequency] over 58% of the entire cortex in CFS patients when compared to controls. [...] These findings are consistent with reduced efficiency of thalamo-cortical connections in CFS participants." [2]

For those interested, here is one of the earliest papers that established a link between the speed of thalamo-cortical oscillations and attention or information processing:
EEG-alpha rhythms and memory processes (Klimesch, 1997)
https://pubmed.ncbi.nlm.nih.gov/9203012/
The author's later work expands on how thalamo-cortical oscillations are involved in both attention/concentration and in information processing/retrieval:
https://www.cell.com/trends/cognitive-sciences/fulltext/S1364-6613(12)00243-4
EDIT: updated quote


I just realized that Mark and Marcie Zinn saw a similar thing as found in the above mentioned (Billiot et al., 2008) EEG study:
EEG peak alpha frequency is associated with chronic fatigue syndrome: a case-control observational study Marcie Zinn, Ph.D., Mark Zinn, MM, Jose Maldonado, MD, FAPM, Jane Norris, PA-C, Ian Valencia, BS, Jose G. Montoya, MD (2014)
[...]
The objectives of this pilot study were to evaluate the relationship between electroencephalogram (EEG) peak alpha frequency (PAF) in CFS as compared to age- and sex-matched controls and to develop a diagnostic criteria using qEEG.
[...]
Mixed ANOVA results found decreased PAF over 58% of the entire cortex in CFS patients when compared to controls.
[...]
These findings are consistent with reduced efficiency of thalamo-cortical connections in CFS participants.


So this may provide confirmation that brain fog could be directly detected by measuring a reduced peak alpha frequency in non-invasive EEG, representing slowed thalamo-cortical oscillations.
 
Last edited:

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
wow this seems hugely important.

could this serve as a way to track disease trajectory? Is it sensitive to improvements and changes?

It does seem hugely important to me, too.
But much more research would still be needed in order to answer your questions.

The first thing that would need to happen is to have people recognize slowed thalamo-cortical oscillations as a valid proxy for the subjective symptom of "brain fog".

Once people recognize that slowed thalamo-cortical oscillations might be a valid measure of brain fog, then it may open the gates to further EEG studies, which are actually relatively cheap and easy to perform.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
The first thing that would need to happen is to have people recognize slowed thalamo-cortical oscillations as a valid proxy for the subjective symptom of "brain fog".

Once people recognize that slowed thalamo-cortical oscillations are a valid measure of brain fog, then it may open the gates to further EEG studies, which are actually relatively cheap and easy to perform.

For those interested, here is one of the earliest papers that established a link between the speed of thalamo-cortical oscillations and attention or information processing:

EEG-alpha rhythms and memory processes (Klimesch, 1997)
https://pubmed.ncbi.nlm.nih.gov/9203012/

Excerpt:
Klimesch 1997 said:
The results of several experiments indicate that alpha frequency varies as a function of memory performance. It was found that in samples of age matched subjects alpha frequency of good memory performers is about 1 Hz-higher than those of bad performers. The difference in alpha frequency between good and bad performers reaches a maximum during the retrieval of information, is much smaller during encoding and is minimal--but still significant--during a resting period. These results suggest that alpha frequency may be a permanent and not only a functional parameter that determines the speed with which information can be retrieved from memory.

The calculation of changes in band power indicate further that the upper alpha band is particularly sensitive to semantic memory demands. The lower alpha band, on the other hand, seems to reflect attentional processes. These findings are discussed on the basis of a hypothesis which assumes that EEG frequencies within the alpha band stem at least in part from the thalamus and that the activity of thalamo-cortical networks reflects processes that are related to searching, accessing and retrieving information from (semantic) long-term memory.


The author's later work expands on how thalamo-cortical oscillations are involved in both attention/concentration and in information processing/retrieval:
https://www.cell.com/trends/cognitive-sciences/fulltext/S1364-6613(12)00243-4
 

wastwater

Senior Member
Messages
1,271
Location
uk
I wonder if there maybe a lack of enhancement from another gene in my case a rare PITX2 mutation affecting pyruvate dehydrogenase at PDP2
This partial deficiency can be late acute viral onset
Causing a mild mitochondrial encephalopathy
I only mean mild compared to severe mitochondrial disease where making in past childhood isn’t likely
 
Last edited:

Celandine

Senior Member
Messages
201
No I saw someone who was trained by him though. The other thing with Perrin is he can only see patients who are able to get to clinic AND do exercise 4x a day consisting of lymphatic brushing. This is exercise plain and simple. It used to thoroughly exhaust me and as you can imagine I found it very difficult to keep up with after a month.

Of course the patient is then blamed when the treatment doesn't work. When they forgot to book me in at Christmas after 6 months of not really gaining a huge amount I just stopped wasting my time.

So my point is Perrin saw mild patients. This might mean those patients a) responded better to Perrin or b) were in th very early stages of being sick and would recover naturally within a year anyway.

I spoke to the lady at my place and they had almost no moderate to severe patients. It costs about £300 a month so not cheap.
Just wanted to say that this wasn't my experience. My daughter saw a Perrin trained osteopath and the cost was £40/session and the sessions were weekly for the first 12 weeks. So, £160 a month for that period. Then it goes down to once every 2 weeks, then less frequent, etc. When a specialist medical consultant charges £300 for a single visit, I feel like this didn't seem overly expensive. The osteopath we saw did not start my daughter out with any home exercises. He was very slow and gradual and very responsive to her limits. There was never any sense of blaming the patient. Not even close. I could see that there were certain points--like the chest/breast massage--where she would crash every time after doing it. Her osteopath taught her how to do this herself as she's a teenage girl and it was just kinda weird and inappropriate for him to be massaging her breasts! This was super low impact light massage of short duration. Like literally 8 strokes on each side Not exercise in any sense unless you are super super severe. But it was clearly releasing something because she would crash every time she would do it. She kept on with that massage when she could handle it and eventually got to a place where she could do it without crashing. In other words, it seemed she had cleared that lymphatic pathway. This coincided with lots of other improvements. Daughter was moderate on the border of severe when we started. We stuck with it for little over a year. I feel like Perrin technique therapy got her body to a place where other things could work and continue to work. I am very grateful for it. She went from bed bound to now heading off to uni and I know Perrin technique was part of that massive improvement. I guess it matters who you see. Like anything, each therapist is an individual. We were lucky to have found someone who was very gentle and a good fit.