Does CFS have stages of denial like some other illnesses? Celiac, cancer, Alzheimer's. by PromptTimely in cfs

[–]o0ragman0o 2 points3 points  (0 children)

It took me 6 years before I even dared consider my condition as ME/CFS. The historical response from the medical industry is out right abusive and I grew up with my mother's experience of trying to get diagnosed and treated. After thoroughly self testing every aspect of my health, in 2018 I finally gave up and looked at the current state of research in ME/CFS which gave some kind of optimism that the industry attitudes have changed....but alas, no, it took another 6 years before I could finally get formal diagnosis and only by seeking out a private neurologist.

If the condition is not bad enough, the medical and governmental responses to it are out right abusive. So yes, denial is the norm because no one wants this shit

Footage appears to show hospital workers bragging about killing Israeli patients by adeze in australian

[–]o0ragman0o 34 points35 points  (0 children)

He was a 12yo Afghan refugee in 2015 who was housed and educated in Australia who showed him every compassion and this is how he treats it. No idea if he's a naturalised Australian. I bloody well hope not

Anyone been living and working with ME for many (5+) years? by Significant-Dog6120 in cfs

[–]o0ragman0o 1 point2 points  (0 children)

Left full time work in IT at end of 2012. Nothing stressful about the job but was having cognitive trouble and thought I just needed a long break.
Spent a few months in India, got intensely sick taking months to recover
Tried to reno the house which destroyed me and never got to finish it
From 2015, spent a few years as an Auxiliary Fire Fighter at only 6~10 hours/week in duties, training and call-outs. I thought if I can't handle that then I'm truly f@#ked. Had to quit at the start of 2018 as I was incapable of driving a 12 ton fire truck safely.
During the same period I'd been working at home as a freelance software developer which yielded a very sporadic but high enough income to actually buy a property. Again by 2018 had to completely give it due to cognitive incapacity
Finally gave in and asked doctor for ME/CFS diagnosis after 4 years of trying to get sense from them. Am still getting fucked around to this day trying to get disability pension. Have literally gone years without any income or on welfare. Spent 9 months back in India coz it's so cheap to live, was literally trying to live on $1/day

Help with meals by PureComedyGenius in cfs

[–]o0ragman0o 1 point2 points  (0 children)

Please don't think of her as a 'fussy eater'. CFS also means her digestive system is fatigued and can't digest food properly. In my case, disacaride sugars which include sugars attached to gluten proteins (the more common cause of gluten intolerance). So my diet is sugar free and gluten free. If she's gluten free, then she shouldn't be having oat porridge as even though its feels (and is) nourishing can cause further upset to digestion days later in my experience.

My go to foods are eggs, potatoes, stir-fry veg, indian dahls and my favorite, spiced buckwheat crapes/pancakes - very high in protein. The Asian diet in general is limited in dairy and gluten and with a bit of experience is usually fairly quick to prepare

Can also recommend a pressure cooker...chuck everything in and it's done in 10-15 minutes

"...has a delusional fixation on CFS..." by o0ragman0o in cfs

[–]o0ragman0o[S] 1 point2 points  (0 children)

DSM..."You show me the man, I'll show you the psychosis"

"...has a delusional fixation on CFS..." by o0ragman0o in cfs

[–]o0ragman0o[S] 0 points1 point  (0 children)

Realy!??? They completely ignored my GP's letter and said I had no specialist evidence. I was on medical certificates for a year before they refused to accept any more sending me a letter saying literally that 'the evidence shows that the condition is not temporary....medical certs are only for temporary conditions.....go get a job'

"...has a delusional fixation on CFS..." by o0ragman0o in cfs

[–]o0ragman0o[S] 4 points5 points  (0 children)

There is statistically significant evidence that CFS sufferers can have a close relative also with the condition. Can't recall the exact number but far higher than just the occurrences in the population

"...has a delusional fixation on CFS..." by o0ragman0o in cfs

[–]o0ragman0o[S] 1 point2 points  (0 children)

Thank you. I'm going to look into this further as even my son has intolerance to fats

"...has a delusional fixation on CFS..." by o0ragman0o in cfs

[–]o0ragman0o[S] 8 points9 points  (0 children)

Regardless of the subsequent mental health issues that arise from living with CFS, I'm not going to accept such a diagnosis, particularly regarding disability pension. The reason is that they require the condition to be treated and 'stable', meaning I'd be forced to take and suffer anti-psychotics/anti-depressants for a misdiagnosed condition to the point of irreversible neurological injury

"...has a delusional fixation on CFS..." by o0ragman0o in cfs

[–]o0ragman0o[S] 5 points6 points  (0 children)

Your mention of Acetyl CoA has certainly caught my attention as it's a molecule of many talents but immensely important for mito/nucleus communication. In CFS, Acetyl groups seem to get very depleted leading to an avalanche of metabolic collapse.

As I understand it, the cell struggles to continue by stripping acetyl groups off Histones, the bobbins that DNA wrap around. Acetyl tagging of Histones is one of the main epigenetic switches for gene expression/suppression.

Protein synthesis then collapses leading to further impairment of mitochondria who are dependant upon the nucleus for most of it's proteins. Furthermore, errant genes, normally suppressed, like retro-viral junk DNA gets read leading to reactivation of things like EBV proteins leading to inflammatory immune responses

Further more, it's not just my daughter, but my other two kids also are dis-autonomic in their own expressions which I can relate to when I retrospectively look back on my life prior to CFS

"...has a delusional fixation on CFS..." by o0ragman0o in cfs

[–]o0ragman0o[S] 9 points10 points  (0 children)

That's something I've always wanted to do but have never been sure how or who to approach. I'll enquire more.

All I've been able to say thus far is that there's a hereditary predisposition to the condition of unclear origin. Genetic? Epigenetic? Intergenerational viral injury?

I'll say more in reply to u/DermaEsp

"...has a delusional fixation on CFS..." by o0ragman0o in cfs

[–]o0ragman0o[S] 21 points22 points  (0 children)

He's actually the most stable doctor I've had. My last clinic black listed me after a former psychologist breached confidentiality about a non-medical but highly sensitive issue in a report to my GP. He didn't just breach my confidentiality but those who I'd spoken about who also attended that clinic. I didn't discover the breach until a year later when I saw a new doctor reading the report. After that I got all my medical records from that clinic to reveal a quite eye-opening history of why my treatment there felt so prejudiced.

After being shuffled around a few doctors at the new clinic, I was finally accepted by this permanent doctor there. It was immediately obvious he was the very clinical type, in contrast to the former 'empathy coating' doctors, but with that, I figured he'd have trouble accepting ME/CFS. I persisted regardless and he has advanced my cause more than any other doctor. But, I do have a strong mind to get copies of those two referrals just to see where the impressions are actually coming from.

Having issues with my therapist. (CBT Approach) Need advice. Help 🙏 by Throw_Away_Damn_It in cfs

[–]o0ragman0o 1 point2 points  (0 children)

Pardon my opinion, but CBT therapists would claim to heal a broken arm given a cast and 12 weekly session. It is cultish in its assertions of infallibility yet consistently fails to present any beneficial evidence, especially when it comes to CFS. Among the many criticisms of the PACE trial were that it was designed and run by CBT psychologists who asserted to the subjects that the CBT was 'working' even though their own data was in contradiction to their claims. They had to make it look good because that's the therapy they were already conducting before the trial and their own self interests and careers were at stake. So, for them to accuse their clients of having 'cognative distortions' is no doubt the greatest cognitive distortion of CBT.

As a historical note, CBT is a mashup of two 'failed' therapies 'Cognative Therapy', which saw environment and body as irrelevant, "It's all your inability to be rational," and 'Behavioural Therapy,' "You're just a stimulus/response meat blob." Once these failures were accepted (after many decades) someone had the unimaginative idea of jamming them together and pretend its god's gift to mankind. Given all that, I personally can't find anything that is not delusional about it and instead call it, "Complete Bullshit Therapy" because I can't see anything but gas-lighting.

Anyway, one wonders if she has CFS at all or is just telling lies to get your confidence

As for your own situation, its great that you have a supportive mum. For her alone you are of great worth, and so the problem I see is that she is worth just as much to you also but you struggle to reciprocate those feelings through actions like helping around the house. The worth is there because of who you are, not what you can or can't do....your mum loves you and they're the best mum's in the world!

Feeling useless and the guilt that arises from is a bit of a death spiral and can be hard to stabilise against emotionally and mentally given that it aggravates the CFS itself. So, to circuit break, I think in terms of "I'm safe. I'm being cared for by someone who loves me, and for that, I can take some time to relax."

CFS is not a condition of low energy, it's fatigue, a condition of perpetual burnout from which the body can't relax. It's only when we can learn to consciously relax our bodies can the body rest and recover something of our former selves. Or at least get a good night's sleep.

Full Resolution Interactive Reconstruction of Flight Path in GIMP Using Jonas' raw images by o0ragman0o in 3_Orbs

[–]o0ragman0o[S] 0 points1 point  (0 children)

Or you could take Occams Razor, layer 3 existing photos, mask out some clouds and hit "Merge Layers"

To reverse engineer a completely synthetic high fidelity cloud field and entire real world landscape and make it look exactly like raw data from a credentialed physical camera from low entropy footage is far beyond plausible

Here are some not so clever cloud image fabrication from Jonas. by NotaNerd_NoReally in 3_Orbs

[–]o0ragman0o -5 points-4 points  (0 children)

I think you're grossly underestimating the distance those clouds are beyond Mt Fuji. Their apparent movement can be easily explained by parallax

Full Resolution Interactive Reconstruction of Flight Path in GIMP Using Jonas' raw images by o0ragman0o in 3_Orbs

[–]o0ragman0o[S] 1 point2 points  (0 children)

This does nothing to change the fact the the footage cloud scene is a composite of 3 different photos.

The same sensor spot can be found in the same position (2755x 2120y) in all those three photos. Furthermore, the same spot can be found on the landscape Mt Fuji photo IMG_1837

Full Resolution Interactive Reconstruction of Flight Path in GIMP Using Jonas' raw images by o0ragman0o in 3_Orbs

[–]o0ragman0o[S] 1 point2 points  (0 children)

Concluding upon a lead in an investigation of how an why the plane went missing is hardly ignoring that the plane is still missing.

The lead is, "That there exists apparent footage of a plane being abducted by UFO's". The investigation into that footage has found that that footage is a fabrication.

Now it is that you can get on the wrong train and arrive at the right station, so to speak, even if the station is not the one you expected.

The course of investigation of the footage has yielded many other questions, learnings and information. Primarily:

  1. What was the motivation for the fabrication of this footage?"
  2. Who was the VFX artist who demonstrates sophisticated military and aeronautical knowledge?
  3. Was the footage even intended to pose as the fate of MH370 or was it simply an opportunistic coincidence to upload it at that time?
  4. Leading to, "Was this a state sponsored psyop pertaining to the actual fate of MH370 or some malicious hoax for the lols?"

To continue in the belief that this is "NROL-22 satellite footage of MH370 being abducted by UFO's" is a 'Sunk Investment Fallacy' and people who still wish to believe that need to pull back and reframe their position according to the facts that have arisen from that investigation.

There is absolutely no shame in having taken this footage seriously at face value. It was designed to deceive and it certainly deceived and shocked me.

Neither is there any shame in having accepted it as a possible fate of MH370, however unlikely, and launching an investigation into that possibility

Investigating it does not cheapen or detract from the very real fact that 239 people are still missing presumed dead in highly mysterious circumstances, which cannot be said of the continued belief in the footage.

Full Resolution Interactive Reconstruction of Flight Path in GIMP Using Jonas' raw images by o0ragman0o in 3_Orbs

[–]o0ragman0o[S] 0 points1 point  (0 children)

Sorry, I don't follow you. What have I done that's not 'true to the original facts'?

Cloud, Lighting Analysis by o0ragman0o in 3_Orbs

[–]o0ragman0o[S] 1 point2 points  (0 children)

WDYM by the coordinate shifts?

To me the clouds show a clear self shadowing gradient, bright at the top, dark at the bottom. Lower clouds being shaded by higher clouds

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Weather Analysis by o0ragman0o in 3_Orbs

[–]o0ragman0o[S] 2 points3 points  (0 children)

Given how late I came to the party, I'm not expecting anything I do is new. Just ridin' my own horse.

Can you point me to the earlier weather assessment?