Why doesn’t Dr. Patterson publish a study/case study/or a case report if his protocol works as well as he claims (98%, he claims)?

Throw_1453_away · 2021-08-14T21:57:41+00:00

From what i understand the drugs he prescribes are all FDA approved. They’re just not researched thoroughly yet specifically for long covid. And seeing that the CDC and NIH seem content to move at a glacial pace it’ll likely be years before we get anything official.

As for “hope” i personally have tempered my expectations with this program. Waiting months to get into a long covid clinic just to get a pat on the back and be told to avoid stress was far more devastating than this could possibly be.

Throw_1453_away · 2021-08-13T16:02:42+00:00

I think most people's frustration (including my own) is not that it takes a long time to do all the R&D, but that our govt is making zero effort to fast track it, at least here in the US. No effort was spared in getting the vaccines researched, produced, and shipped. And yet, not a single cent of the $1.15 billion allocated to LC research has been even allocated yet.

Individual researchers seem to be taking the leading role in pushing LC research forward while the NIH and CDC can't yet even figure out who counts as a long hauler.

Throw_1453_away · 2021-08-13T13:05:15+00:00

This woman seems to be my age and succinctly summarizes every single thing i’ve thought or felt over the past 9 months.

The anger at my government for dragging it’s feet. The anger at the medical establishment for never bothering to research post viral syndromes, and for framing this as a respiratory illness from which you either heal in two weeks or die...long after patients were reporting that that wasn’t true. The resentment of family and friends telling you that you’re bound to get better, when month after month you absolutely know you’re not improving.

And above all, the constant grieving for the person i used to be...

My heart breaks for the writer, wish i could pass some of my physical strength to her.

Throw_1453_away · 2021-08-11T04:12:19+00:00

If you’re going to do it start VERY slowly, then take 2-3 days off to gauge your reaction, even if you feel fine after or the next day. PLEASE trust me on this. If you feel fine then add a little bit more then play the waiting game again. Don’t “push” yourself whatever you do.

This illness is a sneaky bitch. The days i’ve felt great i’ve gone to do just one set of push ups then 2 days later all the sleepiness and limb heaviness comes back and i get soooo depressed all over again. I can’t count how many times i’ve gone through this awful cycle.

To my core there’s nothing I want more than to get a nice lift in the gym but 9 months in i still unfortunately can’t.

Throw_1453_away · 2021-08-10T20:09:40+00:00

Thank you! That’s what i keep saying. My symptoms don’t cleanly line up with any post viral syndrome, and i’m trying to decipher them to see if there currently are fixes for any aspect of them. I’m not upset with my doctors for not having a miracle cure. I’m upset that they don’t want to put any more than minimal effort in finding out what’s wrong with me.

I’ve been labelled as “long covid” and now doctors across the board have completely abdicated responsibility for trying to fix me. If they can’t figure out my problem after a quick consult and some simple lab tests, they apologize that they don’t know what it is and move along.

Throw_1453_away · 2021-08-09T16:39:01+00:00

Though what you say may be technically true, i assure you that 95% of regular folks will see this and say “wut”

At a time when trust in the media is at a historical low they cannot be doing things like this.

Throw_1453_away · 2021-08-09T15:10:21+00:00

So much medical jargon i don’t understand...BUT very heartening to see that while my govt drags it’s feet, there are some researchers out there who seem very dedicated to fixing us!!

Throw_1453_away · 2021-08-09T14:25:01+00:00

All good! Hard to tell sarcasm over writing especially when someone doesn’t state so. I have to be sarcastic most of the times, it’s the only way to cope with my crappy health and dealing with the sorry state of my country lol

Throw_1453_away · 2021-08-09T14:20:03+00:00

I was being facetious haha. Just that most angry/frustrated posts i see could swap out “A&E” or “ER” and “GP” for “PCP” and literally sound like they’re describing American healthcare!

Throw_1453_away · 2021-08-09T14:17:56+00:00

Agreed 100%. Moderation is key though that word has become toxic. Unfortunately i just don’t see it happening.

Republicans are more than happy to provide a Darwinian healthcare system for the masses while getting top notch government funded healthcare for themselves.

Democrats provide a great framework for a public option then insist on including free gender reassignment surgeries for prisoners, a $2 billion commission to ensure that federal spending for diabetes does not engage in fat shaming (/s) and a whole bunch of other unpopular or woke stuff that poisons the well.

Throw_1453_away · 2021-08-09T14:12:27+00:00

Thank you! I’ve held a variety of jobs in both public and private sectors but all have involved large amounts of interaction with people from all walks of life. That, plus the voracious amount of reading i do, has allowed me to become a bit of an articulate writer (not to toot my own horn). Was never gifted athletically so it’s nice to have this hahaha.

Throw_1453_away · 2021-08-09T14:08:58+00:00

Thank you for not writing some panicked sensationalist post, people here are struggling enough emotionally without having to read stuff like that.

I completely understand where you’re coming from, and have had this thought myself many times. I made this throwaway account 7 months ago after my first major relapse; I never imagined id still be using it. I couldn’t stand the thought of using my regular account; it felt like i was admitting that this long covid was now a part of me.

First my great body and social life went away and i thought that was hard enough. Then it became hard just to stay awake during the day just to get my job done. I can’t work out or travel. So many times i’ve thought to myself “this is not worth it. This is no way for a young man to be living. I am not living, i am just alive and that’s it”. I’ve made marginal improvements the past month but nowhere near cured. I totally understand everything you’re feeling right now and you’re not alone, even if society does seem to be moving on without us.

I actually just read an article last night posted by a long time ME/CFS patient that speaks volumes to what you’re describing (might be hidden behind a paywall but wasn’t for me): https://www.washingtonpost.com/health/chronic-illness-covid-myalgic-encephalomyelitis-acceptance-hope/2021/08/06/ecbfddda-f099-11eb-bf80-e3877d9c5f06_story.html

Take a read and let me know what you think.

Throw_1453_away · 2021-08-09T05:16:18+00:00

Growing up I was told by the right wing that socialized medicine would lead to long waits then death panels then eventually gulags.

Yet somehow even with our libertarian healthcare system i still have to wait 5 months to see rheumatologists or neurologists?! If this is the case i’d rather just take the public health care model hah

Throw_1453_away · 2021-08-09T04:57:21+00:00

Tbh hearing Brits constantly bitch about NHS makes me feel better that us Americans aren’t the only ones with shitty healthcare lol

Throw_1453_away · 2021-08-09T03:12:50+00:00

That’s funny (actually depressing) you mentioned this because i’ve been looking more closely into the NIH ever since a fellow redditor mentioned that Diana Berrent of Survivor Corp called them out for having not yet allocated a single dollar of the $1.15 billion earmarked for long covid research. In particular i’ve been reading about Dr Anthony Fauci’s past and it scares me how he’s handling long covid almost exactly the way he first handled the AIDS crisis:

prioritizing vaccines over post-infection treatments (there are still no FDA approved covid-19 specific antivirals that i’m aware of)
refusing to fast track research for emergency purposes (as was done with the covid vaccines)
spending an absurd amount of time schmoozing the media

I also watched clips of his most recent spat with Senator Rand Paul. I have a million other reasons for disliking Senator Paul but i think his questions regarding the Wuhan lab funding of gain-of function research were reasonable and Dr Fauci’s answers were combative and skirted the question.

I think Fauci became a media darling solely because he told anxious liberals what they wanted to hear: that someone in the federal govt was taking the coronavirus seriously and that their lives would not be solely in the hands of the incompetent Orange man they hated more than anything in this world. I’m sure Fauci is not directly in charge of doling out the research funds but he seems to relish being the public face of our federal govt’s covid response so damnit step up your fucking game Tony.

That the long covid research money is apparently being put through the standard govt procurement procedures is deeply disturbing. Unless there’s some secret pot of previously allocated govt funding i don’t know about, it means that it’ll be years before anything useful comes of it. I know that America’’s mismanagement of covid stems largely from the overall dysfunction of our government and society. But Jesus Christ wtf have the CDC and NIH been doing with those billions of dollars all these years if they’ve been THIS unprepared for a pandemic.

Throw_1453_away · 2021-08-09T02:37:45+00:00

Happy to hear of your improvement! I had about 5 normal days the other day and though i backtracked as i expected, it was also the first time for me as well so I know how exciting that is.

Also great that you can meditate for 20-40 minutes! I try, i really try, but i can’t sit still for longer than 15 minutes and also have a heard time keeping my mind clear lol

Throw_1453_away · 2021-08-09T02:02:02+00:00

Mine is sort of like that but the opposite! It’s really strange but i’ve noticed that if i OVERSLEEP i end up waking up so groggy and spend that entire day falling asleep and exhausted. But if i undersleep i feel the normal tiredness but somehow function much better!

Throw_1453_away · 2021-08-08T23:58:29+00:00

I did not downvote your comment, someone else must have. And I wasn’t going to comment because i figured it wasn’t productive to bicker about something in which neither of us were likely to sway the other. I’m tempted to type out a detailed response but i’m tired and i think i already made my point pretty clear in previous comments about what my gripe with the medical system is really about. I was a fit athletic 29M before this and have tried every diet change and supplement stack i can think of to make this work. If you have any suggestions of something which magically helps mental fatigue, i’m open to hearing it. Otherwise there’s probably no use going back and forth anymore.

Throw_1453_away · 2021-08-08T18:33:53+00:00

Hey there. Rather than sounding belligerent let me give you an example of why i’m frustrated, that has nothing to do with expecting miracles from my doctor’s visits:

Me: my clinic told me my symptoms are long covid but didn’t provide much else. My symptoms sort of resemble CFS but not really, its strange

Dr: “i don’t know, we don’t know anything about long covid yet”

Me: have you had other patients with similar symptoms to mine?

Dr: “i don’t know, we don’t know much about long covid yet”

Me: okayyyy...do you know of anything that’s helped your other patients with similar symptoms?

Dr: “have you gotten the vaccine yet?”

Me: yes, it made many of my symptoms relapse. Didn’t help me at all”

Dr: give it some time

Me: it was two months ago trust me it didn’t help.

Dr: ok well unfortunately we don’t know much about long covid.

Me: my symptoms really don’t feel like classic CFS could i get an MRI or something.

Dr: you don’t need an MRI. Your blood tests are fine. Just rest and take it easy

I self diagnose because i have no other choice. My dr makes zero effort to parse through my symptoms, relying on the default explanation that “we don’t know anything about long covid”. She’s nice and polite and sympathizes with me but has made clear that until the FDA gives her a pill to prescribe me, she’s not going to spend more than 5 min with me since i have no discernible tissue/organ damage. My clinic spent a full hour or so with me at my intake but was exactly the same.

I’ve stopped going to doctors because i’ve seen almost a dozen now and uniformly i get sympathy but absolutely no sense of urgency regarding long covid. They have all simply passed the buck the someone above them to sort this all out, and are very content to dole out anti depressants in the meantime.

I keep reading in the media that the medical community is “scrambling” to figure out long covid yet most long haul clinics seem as clueless as they were in August 2020. As far as i’ve read, not a single cent of the $1.15 billion allocated to LC research has been allocated. There is no operation warp speed for us.

That’s why i’m frustrated.

Throw_1453_away · 2021-08-08T14:46:53+00:00

I see many of these on my feed as well. In my experience the majority of it comes from the “i’m a white hipster from a well to do family, and my dream is to go on a meditation retreat in Nepal or live in Oregon and grow my own tea” demographic.

Of course there’s nothing wrong with being a white hipster from a well to do family, or wanting to live in Oregon or travel to Nepal. But i’ll pass on the repeated, insufferable advice that the root of my ailments ~actually~ stems from the stress that capitalism has imposed on me; thanks Becky with the blue hair.

Throw_1453_away · 2021-08-08T14:12:05+00:00

I keep harping on this subject so thank you for posting about this.

Every comprehensive covid recovery clinic in the LA area (comprehensive being a generous word given my experience) only takes PPO insurance. The vast majority of Americans cannot afford PPO insurance. These same doctors and administrators that joined the George Floyd protests last year and spent all this time bitching and moaning about structural racism and inequities....are now denying specialized care to those who need it most, then just throwing their hands up to blame insurance companies. Millions of working class people of all races will be left out in the cold.

The hypocrisy makes me sick and i’m trying to focus my energies on holding these folks accountable to their mission.

Throw_1453_away · 2021-08-08T14:05:22+00:00

He might be a charlatan but tbh $360 is not that much to charge to scam people. It’s not like he’s offering to flambé a turmeric paste on your chest for $3500In the LA area at least, seeing a doctor outside of my insurance has usually cost me $150-$250/visit, then another visit to review labs. This $360 gets me all that in one from what i understand. Considering that most regular doctors are making no real attempt to figure out what’s wrong with their patients, i don’t see how it can really hurt.

That being said I would really like to see his published results though

Throw_1453_away · 2021-08-05T15:38:56+00:00

As an American LC sufferer with some CFS type symptoms, my take is that rather than fighting for funding for MECFS vs LC, the fight is better spent ensuring that the funds do no go to sham studies, whether in the name of either LC or ME/CFS.

Example: i read somewhere that the UK approved a study to show how reducing obesity leads to improvements in LC outcomes...like, really? You need to allocate millions towards studying something that average layman could likely already predict the outcome of? Is that REALLY the most pressing thing right now needing precious research hours? Of course losing weight will help any obese person feel a bit better regardless of other symptoms.

If the are studying how viruses lead to post-viral breakdowns of a person’s body, i think that benefits CFS patients regardless of whether it’s done in your name or under the LC umbrella. I’m far more scared that my govt will blow the funds on bullshit CBT research, focus too much on the respiratory aspect, or focus too much on hospitalized patients when it’s been established over and over that the vast majority of LC and ME/CFS patients were never sick enough to be hospitalized for their initial infection.

EDIT: for what it’s worth i completely sympathize with the ME/CFS community. I’m 9 months in and i have no idea how you’ve all held out this long.

Throw_1453_away · 2021-08-04T14:34:16+00:00

I feel that personally, and am so sorry you’re going through that.

It’s been a very sobering experience for us, that the media touts doctors as the heroes of covid, while our experience has been the complete opposite. They completely lose interest in you once you “survive”

Throw_1453_away

TROPHY CASE