Recovered from ME/CFS after 30 years

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37
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San Francisco Bay Area
Marilyn, what technique did you use when you had some recovery in 2016?
I didn’t use any particular technique, but rather got better for awhile through a life event. That event was something of a trip of a lifetime to a very special place with the two people most dear to me. Several days into the trip I had a whopper of an ME/CFS crash which I was sure had ruined the trip for all of us. Instead I got over it astonishingly quickly. Not only was I fine for the rest of the trip, but I was substantially better after I returned. The effect lasted for several years and convinced me this is a mind-body illness. I describe this in the video link above.
 

Violeta

Senior Member
Messages
3,421
I didn’t use any particular technique, but rather got better for awhile through a life event. That event was something of a trip of a lifetime to a very special place with the two people most dear to me. Several days into the trip I had a whopper of an ME/CFS crash which I was sure had ruined the trip for all of us. Instead I got over it astonishingly quickly. Not only was I fine for the rest of the trip, but I was substantially better after I returned. The effect lasted for several years and convinced me this is a mind-body illness. I describe this in the video link above.
Maybe what was causing your chronic fatigue was a mind-body illness, but I don't think you are talking about myalgic encephalomyelitis.
 

Carl

Senior Member
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480
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United Kingdom
I am surprised that no one has called this out for what it is. You believe that ME/Fibro is all in the mind. I know that it is not in the mind because it is caused by a pathogenic infection which is protected by a biofilm in the digestive system. I know the precise location and how it affects the function of very important systems including the inability to concentrate urine and the function of the hypothalamus. Common bacteria which are highly resistant because of their biofilms, MRSA and Klebsiella pneumoniae and possibly others.

I have both of these which affect my digestive permeability. These cannot be affected by the immune system and therefore the mind cannot, I repeat, cannot influence these infections. Therefore your claimed treatment cannot work for most sufferers.

This is backed up by the science of Increased Digestive Permeability which shows very high digestive permeability in sufferers. I have the added complication of Lyme disease which is attempting to kill me and doing a very good job coupled with a useless NHS which is providing no treatment. I suggest to other members to consider very carefully before spending so much money on this course. I certainly won't be wasting my money on it. I will say that it is fraudulent and praying on very sick people.
 

pamojja

Senior Member
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2,754
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Austria
Reminds me about positive thinking. Yes, it does work, if the right preconditions come together, not under one's own mind immediate control. But then, out of overenthusiasm not recognizing the subtlety in prevalent or not prevalent preconditions, successful patients want to help others. In what suddenly seemed easy. Without understanding the precise mechanism or lack of body and mind preconditions at work, for decades in their own case.

As also seen in this otherwise inspiring case. 30 years just to have the precondition to look a bid deeper, obviously even here wasn't under the own mind's control for that long. Even with immense suffering it brought.

I suggest to other members to consider very carefully before spending so much money on this course.
All superficial psychological and relaxation methods are freely and openly available, these days, if one searches for. Sometimes they work, sometimes they don't (due to preconditions). But yes, if one doesn't feel confident enough to search it out on one’s own, one can go shopping.

But, buyer beware only applies if one doesn't understand the inherent limitations in such services. This course costs about 600,-. With most psychotherapists, this would be maybe 6 sittings only? In most cases, not really making a dent. And 1 success story doesn't tell the many more untold stories without success.

A 10-day non-profit mediation retreat costs about 330,- for boarding/lodging here. But even in this case, training in self-reliability without dependence on guided meditations afterward, results of a course may vary too. There is a reason monks meditate every day their whole life. And its preconditions present or not present, again.

I don’t of course but believe it applies to a lot of people.
Most people don't have the body and mind preconditions ready, to be able to.
 

Viala

Senior Member
Messages
795
This is a third or fourth thread in recent days about GET or some mind retraining miracles. If someone really believes that these things work, I suggest the following course of action. Invite some of the long term and well known members here and offer them the course for free. Let them test it and share if it helped or not, their testimony will say it all.
 

Carl

Senior Member
Messages
480
Location
United Kingdom
Reminds me about positive thinking. Yes, it does work, if the right preconditions come together, not under one's own mind immediate control. But then, out of overenthusiasm not recognizing the subtlety in prevalent or not prevalent preconditions, successful patients want to help others. In what suddenly seemed easy. Without understanding the precise mechanism or lack of body and mind preconditions at work, for decades in their own case.

As also seen in this otherwise inspiring case. 30 years just to have the precondition to look a bid deeper, obviously even here wasn't under the own mind's control for that long. Even with immense suffering it brought.


All superficial psychological and relaxation methods are freely and openly available, these days, if one searches for. Sometimes they work, sometimes they don't (due to preconditions). But yes, if one doesn't feel confident enough to search it out on one’s own, one can go shopping.

But, buyer beware only applies if one doesn't understand the inherent limitations in such services. This course costs about 600,-. With most psychotherapists, this would be maybe 6 sittings only? In most cases, not really making a dent. And 1 success story doesn't tell the many more untold stories without success.

A 10-day non-profit mediation retreat costs about 330,- for boarding/lodging here. But even in this case, training in self-reliability without dependence on guided meditations afterward, results of a course may vary too. There is a reason monks meditate every day their whole life. And its preconditions present or not present, again.


Most people don't have the body and mind preconditions ready, to be able to.
Been there, done that....... Hypnotherapy taken to a very deep trance which I could instantly drop into while I was practising until I stopped and forgot the damn trigger. I could enter a trance while walking. I could enter a deep trance within a minute at one time many years ago. Here I am still with ME AND untreated except for a few herbs, Lyme disease, what a combination with my genetics of predisposition towards heart disease.

Hypnosis can be very helpful but it will not cure true ME! There is a lot of misdiagnosis in these illnesses. Brain scans of the hypothalamus are never done which can show it very clearly. Science isn't even aware of the hypothalamus damage in ME/Fibro which begins to explain many of the symptoms. All caused by a pathogenic infection of a very vulnerable location....
 

pamojja

Senior Member
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2,754
Location
Austria
Science isn't even aware of the hypothalamus damage in ME/Fibro which begins to explain many of the symptoms. All caused by a pathogenic infection of a very vulnerable location....

So do you mean the preconditions couldn't change, even after decades of remodelling? There is no hope for improvement or remissions?
- Somehow, such terminal determinism is alien to my word-view. Everything is changing.

Hypnosis can be very helpful but it will not cure true ME

I actually had all other psychotherapeutic and meditative techniques in mind, but since you bring it up. Yes, also hypnotherapy:

Sometimes they work, sometimes they don't (due to preconditions).
But, buyer beware only applies if one doesn't understand the inherent limitations in such services
In most cases, not really making a dent. And 1 success story doesn't tell the many more untold stories without success.
Most people don't have the body and mind preconditions ready, to be able to.
 
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Carl

Senior Member
Messages
480
Location
United Kingdom
So do you mean the preconditions couldn't change, even after decades of remodelling? There is no hope for improvement or remissions?
- Somehow, such terminal determinism is alien to my word-view. Everything is changing.



I actually had all other psychotherapeutic and meditative techniques in mind, but since you bring it up. Yes, also hypnotherapy:
When the pathogenic infection is removed, stem cells heal the damage. I have seen this occur for myself. There is no room or reason for pessimism IMO. It's just very persistent and adaptable which is why I keep trying to tell people on this forum not to keep using different antimicrobials because the pathogens will adapt to them with their biofilm protection. Everyone will need to compile a list of ALL the antimicrobials they have used since they developed ME/Fibro because those will no longer work well without Efflux Pump Inhibiters. EPI's are another complication because it's a lot of guesswork about the causative pathogen. MRSA/Staph is fairly common but it can be many other pathogens. I believe mine is Klebsiella pneumoniae which is gram negative whereas Staph is gram positive. Candida can occupy a biofilm with gram positive bacteria. There can be multiple infections all of which negatively impact the digestive permeability and LPS influx and inflammation.
 

pamojja

Senior Member
Messages
2,754
Location
Austria
I have seen this occur for myself. There is no room or reason for pessimism IMO.
Glad you saw the same. Preconditions, even with organic damage, can remodel. An example in my case, a brain MRI fishing for causes found a large infarcted area in my cerebellum, bad can't remember any functional impact in my life. So I must assume to have happened still as a toddler (late at sitting and crawling).

It's just very persistent and adaptable which is why I keep trying to tell people on this forum not to keep using different antimicrobials because the pathogens will adapt to them with their biofilm protection.

Interesting. Therefore, I did just ask perplexity which are the main herbs with antimicrobial activity - but which I actually use for their other medicinal effects (I actually avoid per se Antibiotics, due to bad effects in the past):

The main herbal and Ayurvedic anti-microbials include a variety of plants and their extracts, many of which have demonstrated antibacterial, antiviral, antifungal, and even anti-parasitic properties. Below is a summary of the most prominent agents, their botanical names, and key bioactive compounds or mechanisms:
Herb (Common Name)Botanical NameKey Bioactive(s) / MechanismNotable Actions/Pathogens Targeted
NeemAzadirachta indicaAzadirachtin, Nimbin, Salannin; anti-biofilm, broad spectrumBacteria (incl. resistant strains), fungi
Turmeric (Haldi)Curcuma longaCurcumin; disrupts microbial cell structuresBacteria, modulates immune response
Tulsi (Holy Basil)Ocimum sanctumEugenol; inhibits biofilm, disrupts ergosterol synthesisBacteria, fungi
Amla (Indian Gooseberry)Emblica officinalisFlavonoids, tannins; inhibits RNA synthesis, antioxidantAntiviral, antibacterial, antifungal
Giloy (Guduchi)Tinospora cordifoliaCordifoliside C; inhibits bacterial growthBroad-spectrum, immune modulator
GarlicAllium sativumAllicin; disrupts cell wall, antioxidantBacteria (incl. resistant strains), fungi
CloveSyzygium aromaticumEugenol; strong inhibitory effectStaphylococcus aureus, others
GingerZingiber officinaleGingerols, shogaols; cell wall disruptionStreptococcus, Staphylococcus, others
ThymeThymus vulgarisThymol, carvacrol, phenolsBacteria (E. coli, S. aureus, Pseudomonas)
Black Pepper (Maricha)Piper nigrumPiperine; disrupts membrane, broad spectrumBacteria, fungi, parasites
Manjistha (Indian Madder)Rubia cordifoliaVarious; blood purifier, antibacterialS. aureus, E. coli, others
MyrrhCommiphora myrrhaTerpenoids; kills bacteria, fungiE. coli, S. aureus, Candida
SageSalvia officinalisEssential oils, phenolicsBacteria, fungi
Moringa (Shigru)Moringa oleiferaFree fatty acids; disrupts membranesBacteria
EchinaceaEchinacea spp.Phenolics, alkylamidesRespiratory bacteria, antiviral
EryngiumEryngium spp.Flavonoids, phenolic acids, coumarinsBacteria, fungi, yeast, viruses
Long PepperPiper longumPiperine, othersBacteria, digestive tract infections

Ayurvedic formulations such as Triphala churna, Dashmula churna, and Panchatikta Ghrita Guggulu are also widely used for their broad-spectrum antimicrobial effects, often combining multiple herbs for synergistic action24.
Mechanisms of action include:
  • Disruption of microbial cell walls/membranes (e.g., garlic, thyme, black pepper)
  • Inhibition of microbial enzyme activity (e.g., turmeric, amla)
  • Inhibition of biofilm formation (e.g., neem, tulsi)
  • Modulation of host immune response (e.g., giloy, amla)
  • Antioxidant actions that support antimicrobial effects (e.g., ginger, amla, clove)123679.
Many of these herbs have shown efficacy against antibiotic-resistant bacteria such as MRSA and VRE, and are often studied for their potential as adjuvants to conventional antibiotics2.
Synergistic interactions between the many constituents found within plant extracts may provide a benefit over a single isolated ingredient; this may explain the efficacy of lower doses of herbal products like neem oil as compared to individual compounds2.
These herbs are used in various forms: extracts, oils, powders, decoctions, and as part of complex Ayurvedic formulations. Their use is supported by both traditional practice and increasing modern research124679.
  1. https://pmc.ncbi.nlm.nih.gov/articles/PMC7767362/
  2. https://bioresscientia.com/article/...-to-address-antimicrobial-resistance-a-review
  3. https://www.medicalnewstoday.com/articles/321108
  4. https://pmc.ncbi.nlm.nih.gov/articles/PMC3217688/
  5. https://chestnutherbs.com/5-antimicrobial-herbs-for-your-medicine-chest/
  6. https://www.avcri.org/post/discover...tive-natural-antibiotics-to-combat-infections
  7. https://www.healthline.com/health/natural-antibiotics
  8. http://wwi.jmsskims.org/index.php/jms/article/view/1430
  9. https://jontristermd.com/for-patients/for-physicians/herbal-antimicrobials/

Of the ad hoc mentioned 20 herbs (there are many more, if one insists on more with AI; which at first always simplifies) I took 17 for 16 years. The main in quite high doses as extract and herbal preparations. But no ill effects in my case.

Here what I actually used and use them for:

Here is a table summarizing the initially mentioned Ayurvedic herbs with confirmed antimicrobial activity and their other established medical properties, based on the provided search results:
Herb / PreparationConfirmed Antimicrobial ActivityOther Medical Properties
Triphala churnaStrong against S. epidermidis, S. aureus; moderate/weak against other enteric pathogens135Antioxidant, digestive aid, mild laxative, detoxifier, dietary supplement15
Hareetaki churnaStrong against S. epidermidis, S. aureus; moderate/mild against others135Mild laxative, detoxifier, improves digestive functions5
Dashmula churnaPotent against S. epidermidis, P. vulgaris, S. aureus, E. coli, P. aeruginosa, S. typhi135Anti-inflammatory, analgesic, supports respiratory and reproductive health1
Manjistha (Rubia cordifolia)Maximum activity against E. coli, good against others2Blood purifier, supports skin health, anti-inflammatory2
Neem (Azadirachta indica)Broad-spectrum, anti-biofilm, effective against resistant strains378Skin health, blood purifier, supports oral health, anti-inflammatory8
Amla (Emblica officinalis)Inhibits RNA synthesis, broad-spectrum antibacterial34Antioxidant, immune booster, liver support, digestive aid34
Giloy (Tinospora cordifolia)Inhibits bacterial growth, broad-spectrum3Immunomodulator, rejuvenator, antipyretic, supports liver health3
Turmeric (Curcuma longa)Disrupts microbial cell structures, inhibits essential enzymes3Anti-inflammatory, antioxidant, supports joint and digestive health3
Tulsi (Ocimum sanctum)Inhibits biofilm, anti-listerial, broad-spectrum38Respiratory support, stress reducer, immune booster, digestive aid38
Shigru (Moringa oleifera)Disrupts membrane integrity, broad-spectrum3Nutrient-rich, antioxidant, anti-inflammatory, supports metabolism3

Notes:
  • The table includes only those herbs and preparations with direct evidence of antimicrobial activity from the search results.
  • Other medical properties are drawn from both traditional Ayurvedic uses and research cited in the search results.
  • Some formulations (e.g., Triphala, Dashmula) are combinations of several herbs, which may contribute to a broader range of effects135.
If you need further details on individual herbs or additional formulations, please specify.
  1. https://pmc.ncbi.nlm.nih.gov/articles/PMC3217688/
  2. https://www.jocpr.com/articles/anti...against-urinary-tract-infection-pathogens.pdf
  3. https://bioresscientia.com/article/...-to-address-antimicrobial-resistance-a-review
  4. https://pmc.ncbi.nlm.nih.gov/articles/PMC2816493/
  5. https://journals.lww.com/japtr/Full...rial_activity_of_some_Indian_Ayurvedic.6.aspx
  6. https://www.internationalscholarsjo...y-known-as-dashapushpam-from-kerala-india.pdf
  7. https://www.mdpi.com/2076-2607/11/2/272
  8. https://www.tlr-journal.com/wp-content/uploads/2022/06/TLR_2022_16_RANI.pdf

I'm too lazy with AI to insist this morning, but actually all mentioned herbs have other medicinal properties. For which I took and still take them. Without ill effect, but remissions of PAD, COPD and PEMs. In my case.

Therefore, my question arises: Which antimicrobials you had in mind, actually worsening symptoms?
 
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Artemisia

Senior Member
Messages
553
This is a third or fourth thread in recent days about GET or some mind retraining miracles. If someone really believes that these things work, I suggest the following course of action. Invite some of the long term and well known members here and offer them the course for free. Let them test it and share if it helped or not, their testimony will say it all.
Hi Viala, I may be mistaken but I thought I recently read a thread where you were sort of defending brain retraining programs a few years ago? Or maybe "defending" isn't the right word, but making the case they should be considered? Sorry --I'm not trying to call you out or anything but was just curious if you'd had a change of heart after trying one or coming across new info? And if that wasn't you, pardon the misunderstanding!! Just curious how people's thinking evolves over time on this topic. :) ☮️
 

Viala

Senior Member
Messages
795
Hi Viala, I may be mistaken but I thought I recently read a thread where you were sort of defending brain retraining programs a few years ago? Or maybe "defending" isn't the right word, but making the case they should be considered? Sorry --I'm not trying to call you out or anything but was just curious if you'd had a change of heart after trying one or coming across new info? And if that wasn't you, pardon the misunderstanding!! Just curious how people's thinking evolves over time on this topic. :) ☮️

Well that is calling me out even if you write it's not, right? Nothing's changed. It's good to talk about any method that can help, besides GET, as long as there is some useful information how it works. I do not believe that brain retraining can cure ME/CFS, but at the same time I've seen a lot of strange stuff that shouldn't work but it worked in other areas, so that is always a possibility there for some subgroup of people. What could change on a larger scale is that there is more grifters now? Especially with AI on board I am more wary. I've had more success with working on my protocol anyways and I focus on that part now.
 

Artemisia

Senior Member
Messages
553
Well that is calling me out even if you write it's not, right?
I'm sorry, @Viala. I was commenting wondering if you'd come across something or had an experience that had changed your mind, rather than in a spirit of confrontation. but I can understand how it would not feel nice. Again, I'm sorry; I didn't think enough before commenting.
 
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