The moderator of Reddit r/cfsme & r/mecfs pushes CBT and brain retraining and GET and bans you if you say something about it.

[Rufous McKinney]

'It's a special kind of CBT developed for ME/CFS that wants to teach people to ignore their body's warning signs and achieve identity conversion of the patient so they no longer identify as having an illness.'

I participated in a healing ritual the other day. And rituals are something I have found meaningful, and helpful.

However, it included the sort of standard commentary that leaves you feeling its your own fault, you're sick.

It comes with the territory of "Humans Can Be Healed" which of course, I believe is true. I also know viruses are also true, and shit happens. Both things can be true. All three, even.

Somehow I am a bad person, I failed to do something or another, and now I must retrieve my broken spirit that I apparently sent packing some time ago.

The net effect, also, is that my family who also participated, get more fodder for "I must be mistaken about the state of this affair".

Chronic illness is hard on EVERYBODY involved. Isn't it.

 

[wabi-sabi]

I"m drinking tuna water right now, and I swear it's going to cure me!~

(tuna, as in the fruits of a cactus)

Oh, but I had such a funny image of you drinking from a can of tuna fish!

 

[linusbert]

I"m drinking tuna water right now, and I swear it's going to cure me!~

(tuna, as in the fruits of a cactus)

tuna as in fish might actually not be bad, proteins and fat

 

[BrightCandle]

I have nothing but issues with all of the chronic health subs on reddit. The CFS one is run by a misandrist and there have been multiple purges of men over the years. The Long Covid one has some terrible application of its not ideal rules and its full of ME/CFS deniers and a lot of toxic positivity. Moderation is really important, if the wrong person is doing it the entire sub is corrupted by it. The ChronicIlness one seems strongly opposed to medical papers as sources and prefers its own anecdotes over and above peer reviewed science.

Twitters SARS2/Long Covid/ME communities are good but they take time to get into and Twitter is a dreadful place for any discussion. S4ME is often good to read for all its papers and discussions but I stopped participating as the moderators just edit your posts without any regard so I don't want to be giving them more stuff to push their own narratives out with in my name.

We have enough to be dealing with without so many power tripping dreadful people moderating out ill peoples discussions but that is the state of the world.

PS Tuna brine is OK, it works for POTs but honestly it has that tin can taste to it which just doesn't do it for me, pickle juice is better in that regard!

 

[Judee]

they are just heaping up more and more proof of legal liability against themselves because eventually we WILL have a biomarker and when that happens, people will start to sue them for damages esp because there IS enough biological proof now to show that something physical is truly wrong with us..

https://www.healthrising.org/blog/2023/09/09/blood-test-chronic-fatigue-syndrome/

See we're getting closer.

 

[Viala]

He advised the woman to do a prolonged juice fast (months), just juice. She complained that she was getting worse, so she was advised to continue, not to stop. She received the typical blame game. Finally, after her skin began to peel, and her rapid decline, she abandoned and returned to eating animal protein and "miraculously" got better much to the dismay of the advisor. Too bad the advisor did not know about the necessity of protein in the body.

How easily they ignore the fact that someone is getting worse. Persuading people to ignore their symptoms is the most dangerous part of getting any medical advice. I think it's similar with Herxheimer reaction, how many people think they're herxing but in reality they're getting worse?

 

[Viala]

I participated in a healing ritual the other day. And rituals are something I have found meaningful, and helpful.

However, it included the sort of standard commentary that leaves you feeling its your own fault, you're sick.

Right, because the world we live in is a very healthy place to begin with. It 's also happening in spiritual groups, I've seen it as well, like blaming people that they didn't think positively enough. Or toxic positivity. It is everywhere.

 

[JasonPerth]

I have nothing but issues with all of the chronic health subs on reddit. The CFS one is run by a misandrist and there have been multiple purges of men over the years. The Long Covid one has some terrible application of its not ideal rules and its full of ME/CFS deniers and a lot of toxic positivity. Moderation is really important, if the wrong person is doing it the entire sub is corrupted by it. The ChronicIlness one seems strongly opposed to medical papers as sources and prefers its own anecdotes over and above peer reviewed science.

Twitters SARS2/Long Covid/ME communities are good but they take time to get into and Twitter is a dreadful place for any discussion. S4ME is often good to read for all its papers and discussions but I stopped participating as the moderators just edit your posts without any regard so I don't want to be giving them more stuff to push their own narratives out with in my name.

We have enough to be dealing with without so many power tripping dreadful people moderating out ill peoples discussions but that is the state of the world.

PS Tuna brine is OK, it works for POTs but honestly it has that tin can taste to it which just doesn't do it for me, pickle juice is better in that regard!

My twitter experience was great until cfs_research started messaging me privately his views….

Whats worse then Reddit is Instagram… all the holistic accounts promoting Medical Medium and Spirit stuff along with naturopathic(while claiming to cure cfs) they rarely use MECFS as the title..
Like cfshealth and cfsrecovery scams

 

[JasonPerth]

Id still like to know how the user linked Cfs_research with the reddit user and then the name D Jameson
I searched D…. jameson MECFS on google and it really is a peace of crap aswell as the worst non reviewed self paid for article ive ever seen

 

[Rufous McKinney]

like blaming people that they didn't think positively enough.

exactly. I had to limit my contact with such individuals. They pay alot of money, to go somewhere and be quiet for three days while somebody else tells you what you can or can't eat.

I'd say we are the true Zen Masters.

Us, left to stare at the ceiling. Gaze out the same window, if you're lucky enough to have a window. All the ones who claim they set their egos aside- well did they have to give up their careers, due to ME?

 

[Rufous McKinney]

tuna as in fish might actually not be bad, proteins and fat

I'm referring to a wonderful cleansing juice. Thats mostly water. And very little sugar yet its delicious.

Tuna in spanish refers to the fruits of prickly pear cactus, OR a particular group of school children who sing.

 

[Woodyrob]

Stay away from r/cfsme & r/mecfs

It's full of misinformation & harmful treatments. (Like brain retraining)(CBT)

The moderator deletes all comments negative about his/her beliefs so you will only find positive one sided opinions. This is what brain retraining pages do. Remove anything negative about their programs to make you think it works for ME/CFS

You arnt even allowed to question.

Its talks about recovery and gives advice like “what brain retraining course you should take”

This is false hope and its pathetic that a moderator using cfsme & mecfs as a page title is spreading this misinformation when they should be educating people about the dangers & issues surrounding brain training.

Edit: R/Mecfs has the same moderators and this applies to that page aswell.
What a shame. The sub named after our illness has moderators backing this shit.

Its horrible that anyone who is new to Mecfs that uses reddit will no doubt stumble upon the advice of this moderator and potentially deteriorate due to the one sided pseudoscience opinion and propaganda.

We should all join and cause the moderator a headache by posting the truth. Also if in a different time zone post at night when the moderator is asleep,

 

[Viala]

My twitter experience was great until cfs_research started messaging me privately his views….

Whats worse then Reddit is Instagram… all the holistic accounts promoting Medical Medium and Spirit stuff along with naturopathic(while claiming to cure cfs) they rarely use MECFS as the title..
Like cfshealth and cfsrecovery scams

I think we could include information about brain retraining scams in our welcome message here, another thing to be weary about next to GET. Such techniques can be good for supporting mental and emotional health, but not as an ultimate solution and cure for a physical disease.

 

[Viala]

exactly. I had to limit my contact with such individuals. They pay alot of money, to go somewhere and be quiet for three days while somebody else tells you what you can or can't eat.

The extreme version is when they refuse to talk about anything non-positive, including dealing with difficult emotions and situations, so it becomes another ego cult because no one can stay positive 100% of the time and life usually is not like that. I believe it is the same with these brain retraining scams.

I'd say we are the true Zen Masters.

We are Zen Masters and trusting our own instincts should be the most important thing. So many gurus, doctors and self-proclaimed experts don't teach people to think this way, instead there's often 'trust someone else'. How about they'd try to walk in our shoes first.

 

[Rufous McKinney]

We are Zen Masters and trusting our own instincts should be the most important thing

yes, tune into your own wisdom, and listen more carefully to your own inner guidance. Or, ask for more internal guidance, from one's own "helpers".

The extreme version is when they refuse to talk about anything non-positive

Another post of Pond Lilies, floating on a calm body of water....

 

[hapl808]

I think we could include information about brain retraining scams in our welcome message here, another thing to be weary about next to GET. Such techniques can be good for supporting mental and emotional health, but not as an ultimate solution and cure for a physical disease.

Seeing as some people claim to get benefits, I think the warning could be, "While some have claimed benefits, others have said they found the programs unhelpful, expensive, difficult return policies, and somewhat cult-like in their guidelines and instructions." I'm always hesitant to just brand something as just a scam, because mainstream medicine would consider almost everything we discuss a 'scam' unless there's an FDA stamp on it. Personally I think DNRS, Medical Medium, and a few others are total BS, but to each their own.

Even GET is slippery. Some targeted PT when we have no PEM and a good baseline can be helpful, but that's not the same (in my mind) as GET that is designed to improve baseline or banish PEM by pushing through. The latter can lead to a permanent loss of function. For whatever faults, I thought Myhill had a good description of exercise by saying that you shouldn't do any until your symptoms are minimal with no exertion. Even then, she suggests something like one exercise per week, as opposed to the usual every-other-day, etc.

Anyways, my random thoughts. Just don't want any dogmatic views, even ones where I agree.

 

[wabi-sabi]

I think we could include information about brain retraining scams in our welcome message here

I think this is a good idea too, although as @hapl808 says, it would need to be carefully worded.

What does the research say on these things? I mean actual research, not forced patient testimonials.

 

[LINE]

What bothers me is that the neurological system is intertwined with the immune system, and the endocrine response is the third aspect. It is quite well proven in medical journal articles that these three systems are linked.

Example 1: The brain senses stress, perceived stress then triggers the hypothalamus/pituitary which in turn triggers the adrenals. The adrenals secrete cortisol and other hormones as a response to the stress. Cortisol acts on the cells to modify them to prepare for the event.

Cortisol acts on the neurological system causing a myriad of problems such as anxiety, tension etc. Cortisol also acts on the immune system. Prolonged cortisol secretion will begin to weaken the immune system.

I could give many more examples of this system. Bottom line is that the body is encoded with some intricate systems that interact with each other, it rarely is a single system that is the problem.

We could say that counseling can help modify the brain's response to stress by decoding and demystifying the perceived harmful event, which in turn may temper the stress response, but to make an assumption that modifying the emotional response is a cure for ME is foolishness.

 

[Viala]

Seeing as some people claim to get benefits, I think the warning could be, "While some have claimed benefits, others have said they found the programs unhelpful, expensive, difficult return policies, and somewhat cult-like in their guidelines and instructions." I'm always hesitant to just brand something as just a scam, because mainstream medicine would consider almost everything we discuss a 'scam' unless there's an FDA stamp on it. Personally I think DNRS, Medical Medium, and a few others are total BS, but to each their own.

Even GET is slippery. Some targeted PT when we have no PEM and a good baseline can be helpful, but that's not the same (in my mind) as GET that is designed to improve baseline or banish PEM by pushing through. The latter can lead to a permanent loss of function. For whatever faults, I thought Myhill had a good description of exercise by saying that you shouldn't do any until your symptoms are minimal with no exertion. Even then, she suggests something like one exercise per week, as opposed to the usual every-other-day, etc.

Anyways, my random thoughts. Just don't want any dogmatic views, even ones where I agree.

Well said, that's what I have in mind. Such techniques can be powerful and I experienced it myself.

I would emphasize that some of these programs are scams to make money, so people should be aware that they need to choose carefully and be weary about what some authors of these programs promise.

 

[Viala]

What bothers me is that the neurological system is intertwined with the immune system, and the endocrine response is the third aspect. It is quite well proven in medical journal articles that these three systems are linked.

That's the beauty of it. Mind and body connection is always there and we cannot ignore it, it's just that we still don't know how to use it well to our advantage. We know about placebo and benefits of positive thinking, but it is difficult to 'placebo' our thinking so much that we heal ourselves.

Surely it is possible at some Yoda level and there are proofs that it is indeed possible, but to expect it from anyone and especially anyone who is already disadvanted and suffering, it's just wrong. At some point of our technological development we will probably be more capable of managing our mind and body connections, nowadays it's often a convenient excuse for a medical lack of knowledge and in case of scams a convenient tool to transform this lack of knowledge into money.

What's important though is that we don't know which system is the main culprit of a disease. It may be a psychological factor but it might as well be a physical factor, but with new diseases we cannot tell which one and assuming that it's mainly psychological can be quite dangerous.