Sick friend wants to start stillness movement practice - how risky is the self study?

[Takingcharge]

Whats up everybody.

 

 i have a friend thats very ill, she has severe chronic fatigue syndrome / Myalgic encephalomyelitis

 

can  barely eat food due to many food tolerances, has a very small energy envelope.    Shes considering purchasing  the stillness movement membership for their video training, and then theres also a live online class asociated with it

however from what ive read here many people go very wrong on self study cources developing deviation issues etc

 

how risky would you say it is to take on the  stillness movement practice like as a complete novice doing via video training and an online class.

 

i will obviously also e-mail michael lomax w/ the question but would like to hear the opinions here as well.

 

thanks for your input

[Lairg]

It looks like strong flow of group/family karma.   Chinese herbalist can help the organs cope. 

 

Increasing the flow of Light from the center of the Universe is probably best.

 

Also, as she becomes more pure in heart, the flow of group karma can be diverted.  Group karma follows lines of least resistance.

[liminal_luke]

I don't have experience with stillness movement myself but it comes well recommended from people I respect.  If Michael Lomax says it's a good idea and your friend is excited about it, I think the greater danger is not doing it.

[blue eyed snake]

8 hours ago, Takingcharge said:

Whats up everybody.

 

 i have a friend thats very ill, she has severe chronic fatigue syndrome / Myalgic encephalomyelitis

 

can  barely eat food due to many food tolerances, has a very small energy envelope.    Shes considering purchasing  the stillness movement membership for their video training, and then theres also a live online class asociated with it

however from what ive read here many people go very wrong on self study cources developing deviation issues etc

 

how risky would you say it is to take on the  stillness movement practice like as a complete novice doing via video training and an online class.

 

i will obviously also e-mail michael lomax w/ the question but would like to hear the opinions here as well.

 

thanks for your input

 

Reading she has the severe form of ME i would not advise that. Do not know about Lomax but do know quite a lot about ME. The slightest exertion will lead to  possibly irreversibly worsening her condition. Sounds like digesting food is taking too much energy already. I remember countering that with eating 3 or 4 bites every hour.

 

This is specifically designed for patients like her, there's some research done on it,  when you wanna read it just give it a google search. Also look into who has designed these exercises.

 

 

further up to 60 % of patients have a condition called mastcell activaton syndrome (MCAS) , someone should study that for her. When she's in that 60% there are treatments to be had, both supplements and medication. Reading she has many food-intolerances it seems probable to me. Treating MCAS made all the difference for me. Does she have hypermobile joints?

 

Also need to look into B12 deficiency, many patients with ME have that and it should be treated with i.m. injections plus cofactors.

oral supplements do not cut it.

 

Sending love to her as it is a horrible illness which in general is totally misunderstood.

Edited September 25, 2022 by blue eyed snake
typo's

[Takingcharge]

1 hour ago, blue eyed snake said:

 

Reading she has the severe form of ME i would not advise that. Do not know about Lomax but do know quite a lot about ME. The slightest exertion will lead to  possibly irreversibly worsening her condition. Sounds like digesting food is taking too much energy already. I remember countering that with eating 3 or 4 bites every hour.

 

This is specifically designed for patients like her, there's some research done on it,  when you wanna read it just give it a google search. Also look into who has designed these exercises.

 

 

further up to 60 % of patients have a condition called mastcell activaton syndrome (MCAS) , someone should study that for her. When she's in that 60% there are treatments to be had, both supplements and medication. Reading she has many food-intolerances it seems probable to me. Treating MCAS made all the difference for me. Does she have hypermobile joints?

 

Also need to look into B12 deficiency, many patients with ME have that and it should be treated with i.m. injections plus cofactors.

oral supplements do not cut it.

 

Sending love to her as it is a horrible illness which in general is totally misunderstood.

hey thanks for responding… shes 14 years in.

lost immense amount of weight. Like 40 kilos.  

im pretty sure she has bad mcas on amount of the severe food intolerances she can barely eat anything and im very serious sbout that she can eat way less then she needs

 

problem is her intolerances extend towars supplements so she cant even supplement everything

 

she spends all her waking time foam rolling because her muscles cramp to the point of not being able to hold a phone or move

So shes in bad shape

she does have waking hours shes not bedbound completely - en does litteral hours of foam rolling n i guess very gentle stretching.     So she should be able to do some qigong

 

she received a few energy treatments and the impact was huge - she was falling down into inro cvs sickness  and fever - it removed the fever , swollen lymphnodes turned to normal. And some energy thats huge.

 

but her body just sucks it up and the next day shes back at square one.

 

she doesnt want to see drs anymore shes incredibly scared of any virus, and doesnt have the energy due to all going to managing herself n recovering.   Beyond that  because theyve been very useless

 

 

in terms of mcas treatment.  what treatments are you aware of 

 

are there many paths to mcas treatment?

 

EDIT - no hypermobility,  were you thinking of cci?

Edited September 25, 2022 by Takingcharge

[blue eyed snake]

uhm

first a disclaimer, remember i am not a doctor, just a patient with a bit of knowledge, also the amount of info I have on your friend is very small.

 

reading your story I definitely warn her away from any formal training, whether Lomax or something else.

The isometric exercises ( it's not yoga btw) can be done lying down and are created especially for patients like her. Let her try that, the lying down version, maybe after some months she can try the sitting up version. Many people are unaware that even though they do hardly a thing they still are overtaxing the body.

 

It's good to hear that the external energy treatment was so helpful, that gives a spark of hope.

 

I wonder how she fell ill, was it post viral or a gradual getting worse over the years?

 

the weight loss is severe and she will have nutritional deficiencies, all the more reason to look into B12. Any neurological complaints? like tingling, problems positioning herself in space, weakness of legs ( buckling)?

 

The cramping thing is bad, first thing that comes to mind is magnesium but chance she cannot handle it as a supplement is large, look into magnesiumrich footbaths. ( and take care to rinse feet and pat dry afterwards) 

 

intolerance of supplements is wellknown and hard to deal with, the way to go is starting with minidosing of the most important stuff, as an example, I use  medication ( "hayfeverpills") when I started I could handle only about a tenth of a daily dose every other day, took me 2 years to build up to were I am now. Take care to buy things that are preferably pure powder with no additives as some people react to the binders and fillers.

 

MCAS treatment is three pronged

1) try to avoid all triggers, that is not just food but can be a lot of things, the following are mentioned by a lot of patients: scents ( not just chemical scents, flowers can make ill too) every artificial addition to food. Rubbing of the skin, temperature changes ( these 2 can make taking a shower or bath a hellish experience, do not rub dry but pat or just wrap in a towel or coat. For some people light is a trigger. exercise, pain, psychological stress, long list really

ah well, here's a list

https://tmsforacure.org/symptoms/symptoms-and-triggers-of-mast-cell-activation/

 

2) take supplements/medication that calm down the activity of the mastcells/ stabilizes.

there's quite a lot of choice, I would start with PEA, that can be had as a pure powder and as it is made by the body the chance it will go well is relatively large. start with minidosing.

L theanin can be very helpful too, it helps lower the high tension in the body and stabilizes the mastcells.

Vitamin C is a goody.

then you have quercetin and luteolin. Luteolin is very good but pricey.

before starting quercetin find out whether she also has salicylate intolerance, that's quite rare but one can not be careful enough.

in the department of medication there's ketofifen and cromolyn but these need prescriptions. these are both stabilizers. Cromolyn is not for people with salicylate intolerance.

there's more btw

 

3) take medications to reduce symptoms - there is a whole lot of choice there but as she's so sensitive it'll start small. loratadin and cetirizin can be had OTC. It's worthwhile to give it a try but starting with tiny crumbs, loratadin is preferable as it crosses blood brain barrier somewhat.

 

uhm... the shit produced by mastcells makes you sick n several ways, one of them is by effecting the neurotransmittersystem. among other things it makes you feel wired. The stabilizing agents work directly on the mastcells, reducing the amunt of shit, that takes months to get some effect. The antihistaminica works by working on neurotransmittersytem. ( this is very much simplified)

 

whatever she chooses, start with one thing and monitor whether there's change, then build up very slow. Take weeks for every step.

so starting with those exercises and when she's used to that she can carefully introduce PEA.(Palmitoylethanolamid)

 

these are good sources

https://www.mastattack.org/

 

and a book

https://www.amazon.nl/Never-Bet-Against-Occam-Activation/dp/0997319615

 

the book is written by one of the few doctors/researchers that really get it, without that book I would not be sitting and typing here. Every chapter rang several loud bells.

 

I totally get that she does not want to see doctors btw

 

oh, when she has issues with sinuses nasalcrom is a goody, pricey but very worthwhile, look for a brand without conserving agents.

and look for an MCAS group were she lives, a good group is worth so much.

 

about the hypermobility, over the last years it has become clear that there is a large subgroup of ME patients that have lax connective tissue. That can result in CCI but long before that it gives problems. MCAS and lax connective tissue are often seen together.

 

One of the things with lax connective tissue is that it can lead to high muscle tension as the body tries to keep itself together. That means that people with lax connective tissue can be very stiff and not hypermobile. But looking back in the younger years unusual flexibility can be remembered and often seen in pictures of childhood. 

 

when you want to help her start finding good resources, there's a lot of info to be found nowadays.

It's good to know she has a friend like you who cares and tries to find out things, who helps.

Seeing she has a friend makes me happy.

[Lairg]

If doctors cannot find a cause, perhaps the cause(s) are not physical

[Takingcharge]

On 25-9-2022 at 9:25 PM, blue eyed snake said:

uhm

first a disclaimer, remember i am not a doctor, just a patient with a bit of knowledge, also the amount of info I have on your friend is very small.

 

reading your story I definitely warn her away from any formal training, whether Lomax or something else.

The isometric exercises ( it's not yoga btw) can be done lying down and are created especially for patients like her. Let her try that, the lying down version, maybe after some months she can try the sitting up version. Many people are unaware that even though they do hardly a thing they still are overtaxing the body.

 

It's good to hear that the external energy treatment was so helpful, that gives a spark of hope.

 

I wonder how she fell ill, was it post viral or a gradual getting worse over the years?

 

the weight loss is severe and she will have nutritional deficiencies, all the more reason to look into B12. Any neurological complaints? like tingling, problems positioning herself in space, weakness of legs ( buckling)?

 

The cramping thing is bad, first thing that comes to mind is magnesium but chance she cannot handle it as a supplement is large, look into magnesiumrich footbaths. ( and take care to rinse feet and pat dry afterwards) 

 

intolerance of supplements is wellknown and hard to deal with, the way to go is starting with minidosing of the most important stuff, as an example, I use  medication ( "hayfeverpills") when I started I could handle only about a tenth of a daily dose every other day, took me 2 years to build up to were I am now. Take care to buy things that are preferably pure powder with no additives as some people react to the binders and fillers.

 

MCAS treatment is three pronged

1) try to avoid all triggers, that is not just food but can be a lot of things, the following are mentioned by a lot of patients: scents ( not just chemical scents, flowers can make ill too) every artificial addition to food. Rubbing of the skin, temperature changes ( these 2 can make taking a shower or bath a hellish experience, do not rub dry but pat or just wrap in a towel or coat. For some people light is a trigger. exercise, pain, psychological stress, long list really

ah well, here's a list

https://tmsforacure.org/symptoms/symptoms-and-triggers-of-mast-cell-activation/

 

2) take supplements/medication that calm down the activity of the mastcells/ stabilizes.

there's quite a lot of choice, I would start with PEA, that can be had as a pure powder and as it is made by the body the chance it will go well is relatively large. start with minidosing.

L theanin can be very helpful too, it helps lower the high tension in the body and stabilizes the mastcells.

Vitamin C is a goody.

then you have quercetin and luteolin. Luteolin is very good but pricey.

before starting quercetin find out whether she also has salicylate intolerance, that's quite rare but one can not be careful enough.

in the department of medication there's ketofifen and cromolyn but these need prescriptions. these are both stabilizers. Cromolyn is not for people with salicylate intolerance.

there's more btw

 

3) take medications to reduce symptoms - there is a whole lot of choice there but as she's so sensitive it'll start small. loratadin and cetirizin can be had OTC. It's worthwhile to give it a try but starting with tiny crumbs, loratadin is preferable as it crosses blood brain barrier somewhat.

 

uhm... the shit produced by mastcells makes you sick n several ways, one of them is by effecting the neurotransmittersystem. among other things it makes you feel wired. The stabilizing agents work directly on the mastcells, reducing the amunt of shit, that takes months to get some effect. The antihistaminica works by working on neurotransmittersytem. ( this is very much simplified)

 

whatever she chooses, start with one thing and monitor whether there's change, then build up very slow. Take weeks for every step.

so starting with those exercises and when she's used to that she can carefully introduce PEA.(Palmitoylethanolamid)

 

these are good sources

https://www.mastattack.org/

 

and a book

https://www.amazon.nl/Never-Bet-Against-Occam-Activation/dp/0997319615

 

the book is written by one of the few doctors/researchers that really get it, without that book I would not be sitting and typing here. Every chapter rang several loud bells.

 

I totally get that she does not want to see doctors btw

 

oh, when she has issues with sinuses nasalcrom is a goody, pricey but very worthwhile, look for a brand without conserving agents.

and look for an MCAS group were she lives, a good group is worth so much.

 

about the hypermobility, over the last years it has become clear that there is a large subgroup of ME patients that have lax connective tissue. That can result in CCI but long before that it gives problems. MCAS and lax connective tissue are often seen together.

 

One of the things with lax connective tissue is that it can lead to high muscle tension as the body tries to keep itself together. That means that people with lax connective tissue can be very stiff and not hypermobile. But looking back in the younger years unusual flexibility can be remembered and often seen in pictures of childhood. 

 

when you want to help her start finding good resources, there's a lot of info to be found nowadays.

It's good to know she has a friend like you who cares and tries to find out things, who helps.

Seeing she has a friend makes me happy.

Thanks alot for your long responce, i cant read it right now glanced over it,  Il ad a quick few thing

 

-im fammiliar with cci, unfortunately i have issues w my cervical spine that are getting worse.  I already asked her about hypermobiloty

 

as far as i know she has no hypermobiloty

 

-the musckes im worried about - she says its due to weightloss getting short muscles esp in winter it gete very bad

Im Thinking possible deficiencies as well as shes malnourished basicly

I know its easy to be convinced of your own story as you know your body best but its also easy to be wrong

 

she also has body warmth issues, shes often very cold and cant get warm     
 

also not a good sign

 

some other toughts she already does non energetic qigong from youtube basicly so basicly moving exercises

 

Ive been looking into mast stabalisers, are you saying anti histamine are most toleranle to start with?

 

Not medical advice obviously but we all

 

some things that came to mind

 

 

Edited October 1, 2022 by Takingcharge

[Inner Alchemy]

On 9/25/2022 at 1:44 PM, Lairg said:

If doctors cannot find a cause, perhaps the cause(s) are not physical

No, it's a real illness.  I am also an ME/CFS sufferer and it is a real, physical illness.  Many recent advancements have been made to prove that the illness affects different systems of the body.  The main problem is that modern medicine uses diagnostic criteria that are very limited in scope and so many of these chronic illnesses do not show up in their tests.  However, when doctors use some of these newer diagnostic tests they can see how ME/CFS affects the body.  It's a devastating illness.  I haven't been able to work since I was in college because of ME/CFS.  I went through about 16 months almost completely bedridden due to ME/CFS.  I could barely swallow food, it hurt to eat, hurt to shower, couldn't tolerate light or sound.  Severe ME/CFS is a miserable existence.  Luckily I found Qigong and other energy practices that gave me a ray of hope.

 

Edited October 2, 2022 by Inner Alchemy

[Lairg]

2 hours ago, Takingcharge said:

shes often very cold and cant get warm     

 

When breathing in, draw Chi into the kidneys and leave it there on the out-breath.

 

Also the Earth Mother can provide body warmth on request

[blue eyed snake]

13 hours ago, Takingcharge said:

-the musckes im worried about - she says its due to weightloss getting short muscles esp in winter it gete very bad

Im Thinking possible deficiencies as well as shes malnourished basicly

 

yes, i needed bit of time to let that part sink in.

 

the muscle problem may be caused by potassium problems. It's known that the potassium uptake ( to put it simply) is disturbed in patients like her. Meaning that even when bloodlevels are okay the muscles will still have a shortage.

so she could try to take that and see whether it helps. When it helps you will pretty much acutely find some improvement, then it it's finding out how much is needed to get those muscles out of their hardened state.

NOW brand sells potassium gluconate, it's not expensive, you mix it with large amount of water and take a tiny bit of it.

 

the large amount of water will prevent it 'burning' your stomach and makes it easy to take in small amount.

try and see how the body reacts, i do not need it anymore but has done me a world of good some years ago.

 

regarding mastcell stabilizers, they do work but in general take quite a lot of time before you become aware of improvement.

 

formal meds like hayfever pills have an instant effect ( when you tolerate them that is)

 

 

[doc benway]

On 9/25/2022 at 7:48 AM, Takingcharge said:

in terms of mcas treatment.  what treatments are you aware of 

 

are there many paths to mcas treatment?

 

I am no expert on the subject but this is an innovative website that could be useful -

 

https://www.stuffthatworks.health/mcas

 

PS - use caution with potassium supplements. If you use them, good idea to check serum potassium levels periodically

[Takingcharge]

On 25-9-2022 at 10:44 PM, Lairg said:

If doctors cannot find a cause, perhaps the cause(s) are not physical

Once you know someone going through the medical mill youl soon learn that unless  its cancer,  hiv etc  the well established (money making paths)

 

doctors find nothing most of the time nor is there much interest for research as most of it is funded by big pharma. Thats Funding reaearch to support commercial oppurtunities ie treatments that will make alot of money

 

 

[blue eyed snake]

On 2-10-2022 at 4:19 PM, steve said:

 

I am no expert on the subject but this is an innovative website that could be useful -

 

https://www.stuffthatworks.health/mcas

 

PS - use caution with potassium supplements. If you use them, good idea to check serum potassium levels periodically

 

yes, that site is not bad.

Potassium is something to be careful with but it is not as dangerous as many seem to think, you need to listen well to wat your body says, that's all. Checking serum potassium would be a good idea but possibly her doctor will not do that.