Answers to the Questionnaire
LTCOVID.com
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A CRUISE through the responses
Don't have time to cruise at your speed through the answers, one after another?
Looking for just 1 of the 60 question topics? Then here's your solution: The INDEX.
Questions will be presented in order, beginning here, and on the subsequent linked pages.
One question per page. The idea is to let you form your overall impression about these questions, the answers provided, and this group of respondents presenting with "long-term" COVID-19.
This oreder embodies the structure map of the Questionnaire, presented previously.
136 surveys were completed. 1 arrived after data analysis had already been performed, and we decided not to start over with all of that.
Of the rest, only 3 are not included in what follows, having been judged unacceptabel because of inconsistent dates, excessive numbers of incomplete responses and a response grade less than 1. This was based on a Likert Scale of 0 to 5 as defined below.
Using this scale, the 132 remaining questionnaires had a mean score for acceptability of 4.21±0.98.
Time to respond averaged 29 minutes, 32 seconds to complete its 60 questions.
Results based on comparisons within or between groups for specific questions, such as differences found by gender or age for example, will be presented after the complete results for the 132 taken as a complete response set.
Continue with the link below to see one question after another ...
Q.1 & Q.2 : DOB & Age >>>>>>
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Our Study of Light Therapy for "long-term" COVID-19
LTCOVID.com
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When one starts a journey on foot, one step leads to the next.
So here at LTCOVID.com are the steps taken so far (links below will take you to each step):
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- Formulating a Questionnaire to learn more about the "long-term" variant of COVID-19
- Placing that Questionnaire and obtaining responses.
- Gathering and analyzing these responses
- Studying and hypothesizing that the "long-term" COVID-19 illness is a problem with celllular energy. Focusing at higher power to bring in the seemingly inescapable specific involvement of mitochondria in this disease process.
- Focusing on that problem for a solution, and hypothesizing that red (660 nm) and near-infrared (830 nm) light can improve the cellular energy problems encountered in "long-term" COVID-19.
- Summarizing and presenting the above as a quick (7.5 minute) "flyby" overview.
- Sensing, based on past personal experionce applying the Scientific Method, that a study seemed necessary to challenge some hypotheses. And so now, we have landed together on the present page.
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Why a study ?
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- To convince myself that my hypotheses (1. a cellular energy problem, & 2. certain wavelenghts of light may help) are sustainable.
- To convince those with "long-term" COVID-19 that this merits pursuit and should be tried, which can be done safely.
- To convince those scientists and researchers already involved in various ways, that these hypotheses merit being paid attention to. Responses to that challenge may include presentation of data as feedback aimed at disproving the ideas presented here. If well done, that would be most welcome.
- How this might be put into practice and why, has been covered at this link.
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What does our version ( or vision ) of such a study look like?
Here is a video presentation of our thoughts, but more specifically, our current protocol.
The video hopes to provide a good idea of where we are heading. It lasts 9 min & 32 sec:
If needed, here is the link to this video.
So where are we in this? Is our study progressing?
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- Yes.
- We are communicating with potential providers of the required materiel
- We are very concerned that this process will take an important amount of time (it always does) and that the amount of time required, could delay getting a potentially useful intervention to those who could benefit.
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What does number 3. above mean?
Research is sometimes carried out in a "big" environment. All the research that brought the world to a vaccine for SARS-CoV-2 in record time = a "big research" environment.
Big research in a field linked to medical care involves getting onto a path that in most countries involves the equivalent of, to name a few:
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- Institutions that do research (universities, providers of medical care, for-profit organizations, not-for-profit organizations, suppliers, manufacturers, sellers, resellers, etc).
- Lots of employees at such institutions.
- Not just a "shot in the dark." It's what they do, day in day out, since they got into "big research" and made a career of it.
- Institutional Review Boards (IRBs) at such institutions
- Government agencies charged with assuring truth in claims made before marketing of products and existing primarily for consumer safety.
- Et cetera
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All of those exist for valid reasons. Some are motivated by pure science. Others by making a profit. Others by a blend of both. All of those motivations are quite acceptable if they lead to an improvement in the care of those who have a specific illness under study.
Selecting the above point about government agencies charged with review of proposed products before marketing, the FDA is one well-known example. They define a process and an order for its implementation. Those moving through that process spend time communicating with FDA, and usually follow the defined order precisely to eventually get to a stamp of approval.
To get a sense of that process, here are some links:
One example of where the process can lead.
An example of where one does not want the process to lead.
FDA: Breakthrough Device Program
FDA: Early Feasibility Studies (EFS) Program
FDA: How to Study and Market Your Device
FDA: Investigational Device Exemption
I am not about to suggest a method for circumventing the above steps. I believe in their purpose and foundational principles, and even their methods as I understand them.
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Readers who are not in Medicine or Scientific Research have learned to identify the "stamp of approval" signs when increasingly, the public embarks on reading results of research. The NEWS has become more careful about presenting the links to studies and data, and the public follows those links.
The public did that less in the past because, well, it was usually crushingly boring if you hadn't been born and weaned with the right scientific words already in your mouth. Words like: "meta-analysis, Mayo Clinic (or other equivalents), FDA approved, National Institutes of Health, approved by the IRB, World Health Organization, National Health Service, SPF Santé Publique (Belgium), CDC," and all the rest. But readers have learned to look for the labels, even if they aren't always understood in depth. Its just become that way. Wasn't always. And one can quickly tack on here that one obvious reason exists that what has become "Big Science," has invariably become "Big Business." Too often, which comes first, or should, is not always clear. "Just the way it is now, " say those who defend 'the System' in its present embodiment.
"Instant expertise," that too often results when the public follows the links from the NEWS, is not free of risks.
"Big Research" may also mean that Louis Pasteur, John Lister, or Marie Curie and others, might not have had much of a chance of getting their little projects off the ground in today's world. Too much regulation may kill some very promising projects.
And yet, this idea if suggested as fact is somewhat of a myth. A historical falsehood.
These just mentioned scientists and others before and after, were very much attuned to the science that surrounded them and the discoveries of others, staying up to date for their times. Even without email and the Internet, believe it or not. Libraries and written letters exchanging ideas, used to be very popular.
But today, the images portrayed in the NEWS do have more of that "Big Science" look, than images of the lone researcher in his basement lab, surrounded by equipment making sparks, and always with very slicked down or just weird hair (A. Einstein).
In fact, with or without the weird hairdo, everyone reading (and writing) this has some responsibility to enact change. Many (? most) will not pick up that gauntlet.
Why this interlude here ?
Because as an "old school" styled researcher, the path to success will be quite challenging for the solitary researcher writing these lines. While knowiing the steps, having walked them in the past, and not afraid to pursue them one after another, that will be a slow process.
How should that "path to success" be defined?
As fame and fortune?
Getting published in the "peer-reviewed" literature?
Winning a scientific prize?
Selling a ton of devices that FDA approved and that gillions of people bought?
Just a few examples of Fame and Fortune.
I would define it instead as relieving the suffering of many, many individuals who are still in (and are increasingly joining) that group of "long-term" COVID-19.
Making them feel better ASAP.
For me, that would be "success."
I do not want a slow process. Those involved with "long-term" COVID-19 don't want "slow" either.
And they have been to date, remarkably patient patients.
"And ? ..."
And if you are part of "Big Science" as it exists today in December, 2020:
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- if you have at your institution the IRB in place, awaiting to review and approve your protocol
- if you already have sources of funding for a protocol of a probably quite reasonable budget
- if you aleardy have all the required materiel or can easily get it made
- if you have a whole team of interested fellow researchers of all levels who you direct or share findings and work and ideas with each day
- if there exists an office near yours (or you know how to find it) where people work each day communicating with the FDA (or equivalent agency outside of the USA) and who are well versed in completing the required forms and following up
- if a little further down the hall is a Bio-Engineering Department or whatever your department is called where the Bio-statisticians hang out who will be glad to analyze and torture your results until they spit out their truths (the data, not the number crunchers)
- most importantly if you can find scientific merit in our protocol as alluded to in the video above, and published in greater detail through the articles and references provided therein
- if you have a hunch that whether you think it will work or not, it ought to be pursued
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Then ...
Please take my protocol and run with it.
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- if you hadn't even thought at all to date about this path that I have followed to where it led, let it now be your path as well.
- I don't care if you make a bundle or get The Big Prize of not. I sincerely hope you can do both.
- But rest assured that I will be watching to see if you succeeded in relieving suffering, and in healing the sick where possible. Or not. For that, is the true goal. The must always remain primary, goal.
- So what are you waiting for?
- It's not "stealing" since I just gave it to you.
- Modify my protool as you need, to make it happen, and to make it work where you are.
- And good luck with your research.
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I'll still be here.
Moving along as quickly and as best I can, in my way, and respectful of all steps that need to be taken to make this safe and effective for those with the "long-term" variant of COVID-19.
We still have a few ideas that may be of use to all concerned.
Time to move together, not alone. With dauntless resolution.
Now go for it.
"Who is this guy, anyway?"
A little BIO without too many references >>>>
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>>>> And if you haven't see it, our 7 minute "flyby" Overview >>>>
<<<< the page 1 Introduction
A Quick Flyby
LTCOVID.com
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Sometimes there isn't time or energy to listen to a good story.
When a screen writer is "pitching" his scenario to a potential producer, director, or star,
a 30 second (sometimes if very gracious, 3 minutes) time limit is imposed on the presentation.
Such a practice, while certainly a potential source of stress, may favor eloquence.
Let's try it here. A flyby in 5 quick passes at our subject of "long-term" COVID-19, before landing at the rest of the information to be shared.
In this overview, links to supportive material that would seem logical have been omitted deliberately, with the intention of keeping the reader on course.
In the actual content, links where needed are quite present.
The conclusions reached at the time of your arrival at #5 in this overview are based not on a hunch, but on careful analysis of the results of this survey.
This should take you 7.5 minutes.
1. "Let Me Tell You About Our Questionnaire"
(click the image below)
Please fasten your seat belt.
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Putting It All Into Practice
LTCOVID.com
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Lay down your concerns over what others might think, and forge ahead.
- A Questionnaire has taught us so much about an illness : "long-term" COVID-19.
- We have learned a great deal about this illness from those who responded. Our teachers.
- We have a hypothesis based on #1 & #2; that this is an energetics problem. That hypothesis includes:
- That mitochondria are in need of repair to beat the problem.
- That other critical substrates like phosphorus, are essential, but only effective after the repair process is well underway.
- Science is on our side:
- we understand mirochondria now, and so much of what they do. Far from everything.
- we know mitochondria can become ill, and have become ill during "long-term" COVID-19
- we know that red (660 nm) and near-infrared (830 nm) light is:
- safe, if properly applied
- been used to heal problems in many other types of illnesses
- fits the needs of the "long-term" COVID-19 illness to reverse extant problems of energetics
- readily available
- very amenable to Do-It-Yourself therapy at Home (you don't need a CAT scanner or OR table).
- Unlike lasers that generate heat along with their light, the LED variety of this LLLT generates very little to almost no heat. Let go of the idea of applying this light to warm up tired, sore muscles. It may help those muscles, but not by heating them up like infrared. While tanning beds and UV light have always had more attention, and an overlay of causing skin cancar, red and near-infrared light:
- also comes from the sun - red is visible; near-infrared not, though close, but both still sunlight
- excess tanning at the beach has painful side effects, typically not true for red and near-infrared, yet excess may be possible. Unlike infrared light that treats by heating, as just mentioned, these don't.
- I don't have a single reference in my possession that suggest being a cause of cancer.
- Light from the sun is free. Something very nice about that. A gift.
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And like the sun, we must find all possible ways to simply give it away to all those who need it. And they are many.
- You can buy and own your light. You can never own its light.
If All This Means Nothing To You: You're Probably Lost.
Click the link at the top of this page that reads: "LOST: SHOW THE MAP" and start over.
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But if you have been following along and can relate to the above, here's what's next:
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- Who should seek out and apply red (660 nm) & near-infrared (830 nm) light?
- Those with "long-term" COVID-19
- Those being treated in hospital with more severe or critical COVID-19 illness
- Those who present increased risks for a pour outcome if infected
- Where to get the equipment?
- A quick look at what's available, with links
- How it compares (not all are created equal when it somes to energy emitted).
- How to use it.
- How not to use it.
- When to use it?
- Right away of course; soon as yours arrives.
- Who should seek out and apply red (660 nm) & near-infrared (830 nm) light?
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In all of the above, I have no stakes in this. Meaning, I have no motivation to be recommending a
manufacturer, seller, reseller, or anyone in the finances related to such purposes and applications.
No contract with anyone. No percentages of sales. Nothing like that. Free as a bird.
I'll share information about what I obtained, and from whom. After that, ... up to you.
Not completely a coincidence, I began studying red & near-infrared lights well before anyone had the words pandemic or SARS-CoV-2 on their lips. Started a few years back. As the references already presented adequately confirm, many have been deep into study of methods, materiel and indications for use of photobiomodulation (PBM) for years. As shown the results are there. Is there still uncertainty and a lack of knowledge about all aspects of low level light therapy (LLLT) and how/ why it works? Absolutely.
Then of course, there is still much to be learned about how a human brain works.
That doesn't keep neurosurgeons from operating on them every day.
I bought several such lights, appliances furnishing light through LEDs, and studied them.
Various sizes, various conformations, various prices.
I'll share what I learned, but this last section of our LTCOVID.com site, will aim at moving right ahead
towards reducing, if not ending, the suffering associated with "long-term" COVID-19.
This is no longer, as we learned to say during Surgical Residency: "If you can't fix it, don't find it."
I think this can be fixed.
Because of the mysteries, apparent inconsistencies, and unusual aspects of the "long-term" COVID-19 illness, we are currently still living a ‘wait and see’ approach.
Those with it, are waiting to see if it will just go away or present with another recurrence, as some have unfortunately lived. And yes, specific clinics have opened for their treatment. A multi-disciplinary approach is being structured. That's good. Let's get 'em the light.
If I had an attorney she would probably advise me not to start talking diagnoses or making promises about therapeutic interventions, nor forgetting to mention all possible complications. She would say I should make it clear that I'm not responsible for anything bad that happens. If I forgot to tell everyone not to use this electric device while taking a bath, a shower, or swimming in their pool, and someone did, and suffered an undersired outcome, well I'd be sad for that person.
But after about 40 years of doing everything I possibly could do to make a sick patient better, I think I'll just keep listening to my instincts. You should try the light, see what you think, and listen to your instincts as well.
Then give it away.
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Who needs this ? >>>>>
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"I'm Lost!" - Here's the Map
LTCOVID.com
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The Questionnaire
INDEX to The Questionnaire's Structural Parts
The Responses
Answers to the Questions (one-by-one, in a line)
An INDEX to all the Answers (chose the question you want)
Summarized Data of All Responses (means ± s.d.'s & %'ages)
The above link includes:
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Gender differences
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Age differences
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Differences linked to Race
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Fatigue already present before becoming ill
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Differences linked to the number of symptoms experienced
- Two other comparisons of observed differences
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Smokers versus non-smokers
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Normal versus abnormal body size before and during this illness
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Single Topics, explored:
When the answers suggest: Hypocapnia/ Hypophosphatemia
From Responses to Hypotheses
Mitochondrial origins of "long-term" COVID-19
More complete exploration of mitochondrial characteristics
Mitochondrial illnesses, part II
Approaching "Long-term" COVID-19 from a Mitochondrial Perspective
Selected Bibliography #1: Initial links between mitochondria & "long-term" COVID-19
Support for the hypothesis : "Long-term" COVID-19 is a mitochondrial disease
Red (660 nm) & Near-Infrared Light
Moving towards the light: Are we ready to cure this?
Perhaps a bit more information would help, before we embark.
( for that, see below ... )
Exploring Red (660 nm) and Near Infrared (830 nm) light
Bibliograpy #2 - a more complete look at the light
Offered to solidify structure. But don't get lost.
Suggested applications of Low Level Light Therapy (LLLT)
Packing for the trip: don't forget your peripheral brain/ summary notes/ cheat sheet
"Hey! Wake up! There's a pandemic goin' on here, for Chrissake!"
Off we go...
Much like with upcoming vaccines, there's a safety factor that we count on: past experience.
Studies suggest that we'll be Okay after embarking and leaving the port.
Would we like to have more answers from the lab benches of Basic Science? Yes, absolutely.
Is there time for that? No.
Are we being cavalier? No.
Will we teach you how to do this? Yes.
This is time to move, together, not alone.
With dauntless resolution.
Putting It All Into Practice - exactly that. Finally. The first 4 pages of your "How To" Manual.
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- Into Practice: 1. Who ?
- Into Practice: 2. Where ?
- Into Practice: 3. How ?
- Into Practice: 4. When ?
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Principal Investigator: BIO
Some anecdotes, showing how Science moves forwards by smudges.
Our Current Study
Pursuing required materiel at present.
Shall we do this alone? - If need be.
Here's a little video to get a feel for our double-blind, placebo-controlled, crossover study.
But a study of what? You'll have to click here to find out.
CONTACT Us
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