Finding Your Way
The everything INDEX
StudyLTCOVID.com
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This INDEX is written in English. Use the above translator as needed.
Cet INDEX est rédigé en anglais. Utilisez le traducteur ci-dessus si nécessaire.
This INDEX is mostly complete. This, after catching up to enter existing articles.
Additions will be made from time to time, essentially/ hopefully each time a new article is written.
On September 6, '23: Something New !
The "Minimalist" protocol. Click on the link for an introduction into what that represents.
In one way or another, everything on this site relates to potential & actual participants who are involved in demonstrating whether an intervention with light (photobiomodulation) helps those with "long-term" COVID-19 (abbrev. LTC) to feel and perform better each day. (Or not, which will also be reported).
We will find out, and share that news. To "find out," the basic movement is:
- some tests are done and reported before the intervention with light,
- a period of intervention with one or more lights,
- some tests afterwards, and an analysis of the results of this effort:
- Shared here for all to learn from.
The lateral menu at right (seen best on a phone or tablet if you turn these sideways) has categories that should still be of use to you.
On this page, things are grouped with usually VERY BRIEF decriptions and links to the item presented and defined. The utility should come out of their grouping, as seen below. Article titles are usually given just to reduce possible confusion. ("Have I read this one before ?")
Topic: maneuvering around this site
An Index of Articles is where you will land if you click on the "LOST? CLICK HERE" Top Menu Item. It also provides some Background including links to past work, and distinctions of Science and Snake Oil. Some of what is sold today in the LTC field is probably Snake Oil. Some may feel that what we are doing here in this study, is Snake Oil. If nothing else, one distinguishing characteristic is that ours is provided free to LTC participants.
Hopefully, the present INDEX page where you are now will help.
The Lateral Menu on the right should also help.
Topic: "long-term" COVID-19 characteristics
LTC Overview ("past history" of our work from 2020: questionnaire results presentation): An Introduction. This guided visit also includes a 10 minute video. Have no familiarity with LTC ? Not a bad place to start. The article is called: Let Me Be Your Guide.
Numbers (a comment, not a link): How many people have Long-Term COVID-19 (LTC) ?
When this first began, say 2 or 3 years ago in round numbers, estimates seen included
a range of from 30 to 60% of those who had been infected with the virus did have, or would have, LTC.
For quite a while, the figure everyone seemed to report was that 30% of those infected would
wind up with the longer duration symptom complex. That value appeared for about 2 years in journal artices and NEWS reports.
At present (June 2023) the reported value commonly seen is 10%.
So LTC is just going away?
Some who have failed miserably in helping those with that entity would like to believe
in that figure. In fact, they would like to see that value drop to 0% as soon as possible,
and have the whole thing just go away. That way, going back to more understandable
illnesses could again proceed as before. Normal Medicine. Ahh ...
Well. 60%, 30%, 10%, ... one is still talking about millions of individuals who took a hit
in their lives. And its not over. No matter how much those in traditional Medicine would
like to believe or hope it is.
20 Most Frequent Symptoms Just as it says. It's also the name of the article.
DURATION: LTC lasts a long time. At first (around March, 2020, that seemed to be 6.5 months. Since, we've learned its longer (approx. 25 months on average). Importance ? If someone presents saying they have LTC, but its duration is 6 weeks, it's probably not LTC. To update this estimate, we present a survey so those with LTC can share this important info. The article is called: Survey on Duration of Illness.
DURATION - Ist responses to some outreach on Facebook. Mostly a Thank You to those who provided their illness duration data.
DURATION - additional responses. At this point from only 55 responders, the cconclusion about duration in those still with LTC, and those who were now "over it" began to clarify. This article will soon get an update given the increased number of responses since early publication here. Now (21 May, '23) 70 responses via SurveyMonkey survey, and about 40 others from difefrent sources. LTC is lasting about 25.8 months in these respondents. The "over it" group about 7%.
DURATION - Still not answered ? Of course even if you're not yet a participant in our study presented here, EVERYONE with LTC today or in the past ("now over it") should answer these 8 questions in the 3 minutes it takes. You'll get a thank you. Here's the link to that survey.
Topic: Participation in this work. Or not.
Initially, everything here grew out of our full protocol of study. Since our start, some participants presented interest in a more limited "Quick Impression" about the potential effectiveness of an intervention with light. Nothing wrong with that. But below, for this INDEX, two headings at present: FULL PROTOCOL and "QUICK IMPRESSIONS." There are similarities. There are differences. The amount of participant work varies. Both are of value. You decide. Left with questions and uncertainty? Questions@StudyLTCovid.com
The protocols presented below share many similarities. But two are here emphasized:
- the need to be enrolled in the study through a simple participant registration
- the belief that the most basic but most important tool used in Medicine, taking a guided History, is essential to the work here at StudyLTCovid.com. It helps clarify if a potential participant "fits" the LTC mold this study is looking for, or not. It could have been placed above with LTC characteristics. But it has been placed here instead. It is in fact important for those in the Control group as well. For example, imagine that your past medical history includes a chronic illness like Multiple Sclerosis... While still a potential participant in this intervention with light, perhaps you should not be in the Control group.
In both of these, given the locations of participants around the world, online survey becomes an efficient tool for getting this work done. It prevents having to start over as test results are entered with: "what was your date of birth again?" and other questions.
Participant enrollment: link to online survey.
Participant History: link to online survey.
The online survey for Participant History is pretty straight forward.
Here is one point to emphasize:
If the goal is to identify effects of light as described in the various protocols on this site,
confounding elements and variables should of course be kept to a minimum.
At the present time, self-medication for "long-term" COVID-19 is very common.
I understand why that is. But such use of medications or supplements to help with "long-term" COVID-19 findings can clearly have a possible effect on those linked to the intervention with light.
Ideally, all such medications and/ or supplements should be stopped at least 7 to 10 days before "Day 0" (as we call it) in these protocols. Sometimes a medication can't be stopped,
which I also understand.
But at a minimum, make sure and respond to the question on Medications and Supplement use included in the Participant History Survey. That will save time and confusion when results are ebing analyzed and interpreted.
When the information contained in these two has been obtained during an in-office visit, the participant need not complete them again online.
Said elesewhere, we repeat here: no personal information of any participant is presented elsewhere, shared, sold or offered to a third party or anything that sounds like that. It is placed in secured databases and ultimately helps to group and compare results in a disidentified manner.
FULL PROTOCOL
There is a Study Protocol - here, it is described.
Article title: The Study Protocol.
Enrollee tasks and what these require. So named, this article, presents listed "Things To Do" items for this 31 days of study. Also shows a Participant Calendar.
The idea is a month of study, divided into 3 segments. Designed to answer questions like: "How do we know it's working?" "How do we know it's because of the light?" "Seemed to help... Will these positive effects last?"
Vital Signs are a key component for identifying response to interventions in many studies. In the original full protocol, they are described in this article titled: Measuring Vital Signs - why, what, when, how and with what ?
Keeping it safe: Informed Consent - This presents forms in English and French. Typically, those in our study have printed these, read them, and brought them to their first visit to sign before a witness of signature after addressing any questions or concerns. The I.C. process should be part of any protocol implemented here. Article Title: Keeping the study safe for enrollees, and on track for the study: Informed Consent.
Criteria for Inclusion in This Study - these were designed before the appearance of the "Quick Impressions" protocol given below. So these apply to the full 31 day protocol. Nevertheless, still a useful guide.
Article title: Criteria for Inclusion in This Study.
"QUICK IMPRESSIONS"
A quick impression of the intervention under study here, requires a bit more than just shining a light on your head or back or both, then being asked: "Well. What do you think?" Sounds too much like a car salesman after a quick spin around the block in the Rolls Royce (or VW) that interested you and caught your attention.
So, there are about 6 tests before, and 6 tests after 10-days of intervention (10 or 20 minutes per day). I'm not a car salesman nor an owner in a Long COVID Clinic (increasingly lucrative), and you may come to appreciate the clarity offered by tests analysis and feedback. And of course: your subjective impressions. They will be noted by you directly, and by us through your reponses.
Don't have LTC ?
Great ! You can be a control participant in one of several categories. Putting all that aside and instead just sending you a light, is swimming in deep water. Are you a good swimmer (or were you before LTC) ? Athletes seem attracted to the "Quick Impressions" protocol.
"Quick Impressions" was initially formulated in response to several requests, as seen in this article. Most sections of that article and its links are still quite correct (Day 0, for example), but were subsequently added to. Article title: Quick Impressions - Day 0. This article ends by reminding of the importance of enrolling in the study via an online survey: As mentioned above. It's pretty quick. More importantly, the data it generates makes moving information through the test process using export/ import style copy/ paste. That beats re-entering data from scratch, both for accuracy and time saving.
Adding to a "Quick Impression" - leaving out some basic physiologic measures in this reduced protocol lacked some appeal for someone with years practicing Medicine (me). So this article moves through that. Those who became participants were also quite willing to accept these additions. Not only kind, but a typical LTC response which we remain thankful for. Article title: Adding to a "Quick Impression."
People agreed, and the Attention & Reaction Time test and Peripheral Smear associated with a Walking Test were voted in to complete the "Q.I." protocol.
Here are some useful links to help in getting this test done:
- Test of Attention and Reaction Time - Day 0 - video in English
- Very short survey to provide your responses to this test on Day 0.
- Test of Attention and Reaction Time - Day 11 - video in English
- Very short survey to provide your responses to this test on Day 11.
---------- et maintenant pour les francophones ------------
- Le Test d'Attention et de Temps de Réaction - Jour 0 - la vidéo en français
- Sondage très court pour apporter vos réponses à ce test le Jour 0.
- Le Test d'Attention et de Temps de Réaction - Jour 11 - la vidéo en français
- Sondage très court pour apporter vos réponses à ce test le Jour 11.
The "MINIMALIST" approach (Sometimes called: Approach 3)
Some potential participants found the "Quick Impressions" protocol less quick than they could have wished.
So as an expression of our scientific flexibility, here is the "Minimalist" guidebook.
What is the "Big Picture" here?
The participant gets a light and a stand to hold it in place.
The participant uses an online Journal to feed back on each of 10 days intervention with light. (Or most of those 10 days, if that gets too challenging or too boring on a daily basis), ... how it seems to be going subjectively.
Here are some articles that pave the way ...
- "Minimalist" - an introduction
- The light stand and its parts
- "Minimalist" - So What's Next ?
- "So How's It Going ?"
- Are we sliding towards testimonials, unchallenged impressions and magic ?
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Topic: Administration of this work.
So, as in the larger protocol of 31 days, there are administrative tasks.
Measurements are made. Sometimes here. Often in participants' homes.
There are tests BEFORE the intervention with light (call that as we do: "Day 0."
There is the intervention with light (where do you think that light comes from) ?
(How will you know what to do with that light ?)
There are the tests AFTER the intervention (call that "Day 11," as we do).
Then there are participants who have elected and been accepted as CONTROLs.
All of that generates results. Those have to be transmitted.
Those have to be saved. Those have to be analyzed.
Results have to be fed back to participants to maintain and generate
interests and answer questions.
"Geeze ... sounds like fun work." (Both descriptive words are correct).
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So, to make it happen,
- do and process tests,
- do the intervention,
- do and process more tests.
- For 1, 2, 3 above explain "How To Do." (see below and elsewhere).
- Decide where to go next.
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"QUICK IMPRESSIONS" Administrative Tasks
When participants well, participate, they do it with stuff.
They get essentially all this stuff from us; from the study.
To clarify the process, they receive, along with the "stuff," two envelopes.
These explain the step-by-step process. Unfortunately, a printed sheet in an envelope doesn't contain working links. Most results and observations are returned via working links: links to brief surveys; links to pictures or forms to print for example.These are found on this site at (no surprise),
Article Title: "Quick Impressions" - Day 0 and Day 11 envelopes.
Of course, Control subjects in the "Quick Impressions" protocol need their "stuff" as well. They find it here:
Article title : "Quick Impressions" CONTROL Subgroup - Day 0 and Day 11 envelopes.
Envelopes can get misplaced, so even though this may be duplication and unnecessary, here are the pages for
"Quick Impressions" - Day 0 work (test lists and required links for reporting).
Article title: "Quick Impressions" - Day 0 (only) tests and links
"Quick Impressions" - Day 11 work (test lists and required links for reporting).
Article title: "Quick Impressions" - Day 11 work.
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"QUICK IMPRESSIONS" - Language Work-arounds
This site uses an embedded Google Translator device on most pages. Typically, once selected on the first page, the translations also happen on subsequent pages.
But to make sure all of the test, intervention and data administration tasks happen without problem, I have translated all the tests and explanations in French. French, because where I am located is a French-speaking community. So local subjects included as participants tend to like that.
I am not going to duplicate all explanations of survey work etc., here for this INDEX. That would defeat its purpose. So all of that material is found at the Category in the Lateral Menu at right: "Q.I." pour francophones. You can click that link at left, to go there. Or I should say: cliquez le lien ci-dessus à gauche pour trouver ces articles pour le groupe francophone.
ALL surveys have been duplicated and translated into French. I should have written: TOUTES les enquêtes ont été dupliquées et traduites en français.
Day 0 events for French-speaking participants are located here. And Day 11 events and required links for reporting in French are on a separate page at this link.
Les événements du jour 0 pour les participants francophones sont situés ici. Et les événements du jour 11 et les liens requis pour les rapports en français se trouvent sur une page distincte à ce lien.
Ceci pour les participants au protocol "Impression vite-faite" ou "Quick Impressions."
Topic: DEMOS - Lights
For participants in this study, a "How To" manual is essential.
Why? To reduce variability in results obtained is one important reason.
More directly, if you are going to take your blood pressure at home and report the results, how should you do that? You may be asked shine a light on your head ? Is that safe ! ? What each participant does should be quite similar to what the other participants are doing. DEMOS help to bring it all together. Have a "How To ?" question, start here. Still have a question afterwards ? Send it to Questions@StudyLTCovid.com
Shining a light on oneself. What does that look like ? It might vary just a bit.
While focusing on "how to do" for tests is essential, making sure that participants are applying the intervention with light in the same way, is also clearly essential. Below, articles should give you a sense of different ways in which that can present. But participants should be doing the assigned intervention one way, and not 5 different ways. That gets randomized, assigned, and explained.
All about using light as an intervention.
Article title: Intervention
Using the 3-Lights Stand Have a look here. This is presented with videos in both English & French. This stand we built to use locally. Especially useful for those with certain chronic illnesses with or without LTC. "A demonstration of practice and principles of photobiomodulation applied to frontal and lateral aspects of the head." (As the video says and shows). The article is called: Use of the 3-light stand.
Topic: Equipment
Making measurements requires measuring tools.
These are presented here as a separate category: Equipment.
This link gets one to the correct descriptive articles on equipment. They are more than complete in detail or assisted with videos. Complete readings of these are less indicated than checking one or the other when a specific need arises for the blood pressure device, or visual acuity equipment items and methods, or for settings for the chronometers. Pulse oximeters are pretty straight forward, but nevertheless described in an article here.
And why include a test of visual acuity in studying participants with LTC ?
Topic: DEMOS - Tests and "How To's"
These instructional articles were mostly formulated for those participants enrolled in the
full 31 day study. They are still of use for those in the "Quick Impressions" protocol subgroup.
Below, the links go to spots you may have already seen, but just in case you missed it ...
The Visual Acuity Test - Here is everything about how its done, its material, and material
related to getting your results back to us.
The Blood Pressure & Pulse, wrist cuff device - Everything about how to do this right.
The 6 Minute Walking Test that follows, clearly requires knowing how to use this material.
The 6 Minute Walking Test (6'WT) - This page provides the details related to measurements made during the 6'WT. It also adds some instruction for the processing of the Peripheral Smear work done as part of the 6'WT in the "Quick Impressions" group. This test has been a part of the larger protocol since the start, and provides quite useful physiologic exercise response and recovery information. Combining Vital Signs with a look at cellular responses gets quite close to LTC findings. Article title: In Support of the 6 Minute Walking Test;
The Pulse Oximeter - even though COVID made us all experts in checking our peripheral
oxygen saturation, getting a believable number is at times problematic. For example, many
with LTC have a thing going on called Raynaud's Phenomenon: fingers and toes get icy cold
and peripheral blood flow can't be measured. Swell. So try to carry out your measurements
in a warm-ish room, and warm hands before starting up the pulse ox.
this contains a video to provide a method and materials introduction. Can also be viewed on Youtube at this link. I mention here a little tip once you've watched the video. When practicing this, rather than poking your finger or your neighbor's finger 4 times until you get the technique perfected, practice it with a drop of soy sauce. Works great and washes off the slides to get them good as new. Article title: The Peripheral Smear Day 0 twice; Day 11 twice - The "How To."
Feedback: the error in producing a good peripheral smear seen most often so far is this ...
One gets in a hurry at step 1 (seen in video). Step 1 is where one backs up to pick up the
drop and let it spread across the pusher slide. Let the drop spread to about 75% of the width
of the slide. Then do Step 2. Some have not allowed the drop to spread. Result: a skinny trail across the middle of the slide. Let it spread before pushing. (None of this will make any sense unless you have seen the video. See the video.
The Chronometer - definitely a too long article, but there you go. If you just use two buttons
on the stopwatch and don't touch anything else. You are good to go. If you touch anything else and mess up the settings, this article gives specific instructions about how to get back to where you bagan and hide your mistake.
Kitchen Timer - this countdown timer is handy for staying on track with measurements during the 6 Minute Walking Test. Set it for 5 minutes. If you set it for 15 minutes and try to
stay on track with measurements of Vital Signs, you'll probably fall behind. It's covered in the same article as the Chronometer, above.
Topic: "What's in that Box ?"
Some participants are located close to us.
They still require material for carrying out the intervention with light, and the
study protocol. When they leave their in-office consulation, they can carry off
their box of equipment. (Sounds better than, "box of stuff" ).
Participants at a distance from us, get the box of stuff (sorry), box of equipment shipped to them. That includes administrative time and costs, but there you go. Either you ship some stuff or everybody comes and stays a while at my house.
Not a bad option now that the weather's nice.
In both cases, it's good to know the answer to: "What's In The Box?"
Shipping complicates things because people in Customs Departments also want an answer to that question. They seem particularly interested in the value of all these
items, in addition to presence or absence of dangerous or toxic items. Their primary goal seems to be imposing taxes and fees. They don't like estimates in this country. They like proof of purchase and price paid documents. It's good I don't include an old pair of my slippers in the box, because that might be difficult to price specifically.
The bigger box also contains smaller boxes. Links below should cover all of that.
Unpacking the Box - Here you will find the boxed items, what they look like, and an initial comment on purpose/ function. This, for the Big Box which of course contains smaller boxes and other stuff. If you feel a bit overwhelmed as you unpack your box, make sure you've seen the Unboxing article: it's the right place to start.
The Peripheral Smear Kit - It has just enough content, that this box requires a separate article to explain what's packed inside that little box. Want a preview ? Here's a picture:
How to fix an air-dried peripheral smear is covered in this video. (In English).
If you are not a lab technician (most in our study are not), you may be slightly nervous about
doing this right. Messing up and having to poke a finger 8 times to get it right is not very desirable. So instead of practicing with your drops of blood, practice with a drop of soy sauce.
Let it dry and see if you have a good result or not. Then wash off the glass slide and try again or go for it. Poke your finger and place and smear that drop on a very clean slide.
Still a bit flustered ?
How to do a peripheral smear is presented in great detail in this video (in English, mais les images rendent cette procédure assez claire).
Index of Articles - A Guide Through This Site
StudyLTCOVID.com
Thanks for visiting!
To translate this page, select your
language from the dropdown menu below:
Update: Life evolves, and hopefully so does this site.
While everything on this page is still pertinent, working through all the material gets increasingly difficult for you the reader. So make sure to also use the "Everything INDEX" page to help guide you through the woods.
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The goal: To see if a certain wavelength of light helps those with "long-term" COVID-19.
No enrollees, no study, no answer, goal not met.
So for a possible or actual participant in this study, presented below is a useful Index of what appears on this site.
It should help you move through the information in a logical and helpful way.
Come back to it often if you feel lost, or if you feel something is missing from the story for you.
We'll keep the Index complete as items get added.
You'll find that sometimes information relevant to the study is not actually on this site.
It's on another "sister" site that preceded this one, which is devoted by choice and necessity to the present study. But the other site offers essential background.
For example, a bibliography of articles on mitochondria and COVID-19. Here's another. "Long-term" COVID-19: It's about energetics, mitochondria, damage and repair. Links to such articles will also be included below in the Index where useful.
The translator included above should help solve problems for those where English is not the native language.
As you work your way through this, if a question or several questions arise, write them down and send these to Questions@StudyLTCovid.com A prompt response will reach you soon.
INDEX - With Annotations
The Landing Page - you saw that.
Criteria for Enrollment - who is the study looking to study? The "long-term" COVID-19 illness has symptoms. Are these what you have lived?
The study's Protocol - it's the guide and summary of how this study should proceed. How things are done, why, when, and by whom ..., declare their answers through the Protocol.
The guiding light (with occasional periods of eclipse) in this work is the Principal Investigator, who's BIO is linked to on the LTCOVID.com site.
Brief summary? - In a study limited to those who identify as having "long-term" COVID-19,
an intervention with light will be studied in a randomized, double-blind, placebo-controlled manner. Several types of data will be gathered and analyzed to see if this intervention is or is not effective.
Enrollee tasks - Those who sign on will do some work in support of the study, over a 31 day period. These tasks should generate results that define the level of effectiveness of the study's interventions. The more a participant is committed to performing this work as described and thoroughly explained, the more convincing will be the analysis of results obtained. Even if these lights don't do a thing in this setting, it's important to know that. Those with "long-term" COVID-19 have been struggling for 6.6 months on average. Many longer. Sharing their situation over 31 days will probably not seem particularly long, or certainly be more tolerable and shorter than the illness has been. This work is randomized but not random. By which is meant that this is not "anything goes," or "we'll try it and see..." As you continue to read here, judge carefully for yourself whether a desire to commit to this protocol is felt or not.
The Participant's Calendar - Things to do on certain specific days, requires a calendar for clarity and confirmation. This is it. This page also addresses how certain days are different from others, and which measurements are made on which days.
DEMOS - these are a part of the instructional material in support of a participant's tasks. Some are written out. Some are galleries of images or a video. Often, all of those. The following link takes one to a page presenting an Index of DEMOS, so one can more quickly find what one needs, and review what the process should look like at home. It should be reassuring to view these. There is no exam at the end.
BACKGROUND
What preceded the present study and led to it should probably be of interest.
We're talking about a viral illness that got out of control and for many, remains so.
Actually, that has been summarized, including required links, on the landing page.
Pertinent info arising out of a questionnaire is quite exhaustively presented at LTCovid.com
Less exhaustive (and exhausting) but perhaps effective, is the "fly-by" overview from
that site to get one started thinking along with us, towards our present protocol.
We introduce these past results on this present site on this page: An essential "home point" to always return to as we advance in this study.
Is this Science or Snake Oil?
We accept the question without insult, since we posed it.
Ans.: We'll make sure it remains Science, and will make its results available for appropriate challenge by the scientific community.
And here's another question ...
If this is Science (notice the capital "S"), why aren't the BIG Boys doing this light thing?
The BIG Boys created vaccines. Wow! The BIG Boys are starting to open "long-term" COVID-19 clinics after ignoring and belittling all those presenting with it for more than a year. So why aren't they selling light?
So far, it doesn't fit their posture and positioning. They do Goliath stuff. This study's protocol is David stuff.
Then again ..., who won that fight?
Look around at LTCovid.com. The Science is in fact unmistakably there, or linked to.
The "pitch" for selling bowling balls is not the same one as the "pitch" for selling fishing poles.
Doctor Goliath, while you're memorizing your Medical "pitch" for COVID-19, go ask the majority of those with "long-term" COVID-19 how well they were welcomed in your existing Medical System during the past year. They'll tell you.
And while they were waiting for Doctor Goliath to wake up, to take notice and listen to them, they took care of each other. Healing starts with giving a damn and with silly-sounding expressions like "feeling their pain." Without that, Medicine, Science, and everything associated is frightfully lost. Hopefully, it's not too late. JAMA (The Journal of the American Medical Association) says that 1 in 5 physicians has had enough and is getting out. Hopefully, it's not too late.
And here we are.
So, potential participant, are you up to the challenge? Do you fit with its entry criteria?
Honestly, we hope so.
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