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Yeah I don't know what I'd do without this forum either because there's so many people here that come from so many angles. Overall there hasn't been a single person here who has completely figured this out and a lot of us are on entire pharmacy's worth of supplements every days and always trialing something new or testing this/that with this/that treatment. If I quit everything I know I'm finished. I can think or believe whatever I want but that's not going to change the crash I may not recover from's result.
This is coming from someone with actual PTSD and genuine anxiety problems I am always further dissecting. Do they interact with various states of my nervous system and immune system causing various symptoms? Yes but they never cause them outside of a vascular fluctuation from a trigger causing more head pressure or a certain neurological state making me more prone to depression from thing A, B, or C. If I cry too much this can lead to a migraine if I'm not careful. Often the symptoms control what I am prone to feeling at the time and what memory reference networks my nervous system is using from what the state of my symptoms is forcing. It doesn't matter what my mindset is, this doesn't change until some physical process going on under the hood switches state and starts functioning more normally again. That was quite the mouthful but that is the most coherent way I can describe the intersection of genuine controllable to a degree mental health struggles and disease states.
Im as severe as my ME has ever been in 10 years and my mental health is totally fine.
Ive been more stressed when my ME was very mild and i was working full time with no bad Dysautonomia symptoms.
I really dont think their is any link whatsoever between mental health or psych and ME ,besides added oxidative stress like catching a virus or getting a vaccine while having the ME issue which could cause problems with the added OS, and stress is one of the worst OS events we can have that can certainly cause decline, usually i spring back to the baseline i was at the moment the stress is removed though.. but less likely if i catch covid, get a covid vaccine, or exercise..
I can only speak on behalf of myself though and post viral ME patients, im unsure about car crash/surgery and so on ME patients. Some of them get CCI stuff done and suddenly are in remission so i cant know if thats ME or a CCI neck issue which makes me wonder if that’s a different issue mimicking ME’s ANS dysfunction but getting the same diagnosis. It’s so complicated.
Edit: I used to suggest joining X for real-time MECFS updates from research teams, doctors, and advocates, but it’s become too political lately. Everyone has their say, including me, but only certain individuals accept others views, and only certain individuals cry and run away because their is no moderator to demand removal due to negativity as they would in facebook groups and on X when getting upset.
Even ME researchers/advocates I followed now post about wars or take sides on issues (publicly), which is fine privately but derails the focus when you’re there for ME info and just follow them for that. I don’t mind differing opinions and don’t block people over them, but many of the opposite beliefs do with insults and demands.., and it’s constant.
Sadly, even the ME and LC communities on X spend too much time publicly clashing over ideology or social views and eachother without just being noble and just providing facts like papers and research that exists., dismissing others with ME if they don’t align. When at a workplace for example it should all be irrelevant what religion your colleagues have for example...
This forum is a relief because it keeps worldviews out and focuses solely on ME. I no longer recommend X to newcomers—the risk of being attacked by anonymous accounts causing more harm than good isn’t worth it. The only positive is that if a DNRS advocate account like Paul Garner speaks about ME being a burnout mental health issue, its community noted quickly with facts about the post being incorrect where everywhere else a gullible patient could believe whats being said online as its all seen as fact. Like r/cfs reddit for example when someone claims recovery. An anonymous user who could have any fatigue condition diagnosed with CFS which we know is used laymen by GPs globally and an illness with no cure besides some recovering usually early on before it can even be diagnosed. Generally some of these stories are so obviously not ME and red flags are apparent, but if your question them, your banned/blocked and gullible patients who are desperate for full health will listen to the story and be harmed. Or atleast waste money.
I ran a small ME chat group once that was going very well until someone with a different sex and opinion to me outside of ME demanded me add a female and unisex mod or they would leave and take other members with them because they felt uncomfortable, when nothing was ever noted as uncomfortable in the group, it was usually just patients sharing advice or talking about research or supplements and which local doctors to recommend, basically everyone has spoken positively of the group besides one person who was an odd one out.. , i was basically forced into it for group harmony reasons but the group was never the same and that person who complained ended up leaving anyway…. Its a crazy and mental world we live in and its very hard to find a space where its ME and only ME with ME views being allowed and respected, everything else is irrelevant, like DNRS, and world views.
This individuals use their social status to use power and its very hard to remove that privilege from them if they demand it.
There are more brain things going on than just the limbic bits,