StudyLTCOVID.com

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This page serves to organize the "Quick Impressions" process.

What is that?

Several people have expressed an interest in trying out the device we use for our intervention with light as described elsewhere on this site. Their feedback to our outreach is that they'd like to give it a try: to get an impression.

 

Wonderful!

 

At present, to those showing this interest, we will send the material.

How to get the same material in the future may change, as thousands line up to look a gift horse in the mouth.

 

In exchange, and founded in a continued dedication to having observations that can be subjected to statistical control, we'd like to gather a little bit of data.

 

This as painlessly as possible.

 

Discretely: Respecting personal privacy issues, while not getting confused about who is providing impressions or feeding back data.

 

Nothing too heavy or too time consuming.

Linked to fit in with what we have already learned.

Which is?

 

That the intervention seems safe (consistent with reports in the literature x 40 years).

That participants have a positive response to this intervention applied over time.

 

If we can't chat over coffee ( or anything else), why not ZOOM (or Skype or Signal or ...)

 

Follow-up, Q&A sessions, discussion of results, will (as per present plan, which is flexible), happen via ZOOM meetings. Scheduling for people located around the world, (and who are doing other things besides helping out with this study) invites complication. So to avoid such meetings at middle of the night hours, many such different meetings may be required. Their format will remain "quick and easy," rather than "all inclusive, time-consuming, massive presentations to thousands." Just one other person in the next meeting? That's fine.

 

Meetings will serve to explain the choice of tests we'd like to do (and proposed below). 

Meetings will serve to listen to feedback from "Quick Impressions" participants.

Working at a distance means that many tests done with participants where we are located will be omitted (so don't get anxious, but also don't start feeling left out).

 

 

Goal:

• The 'Quick Impressions' participant gets just that: an impression of the impact of this intervention with specific wavelengths of light, on their condition. They'll be the final judge.
• What "condition"? Their daily life with the sequelae of "long-term" COVID-19.
• To gather observations that allow useful assessment of this "Quick Impression" in addition to that subjective opinion. I value both highly.
• Both the more complete and this "Quick Impressions" component have the same goal: to identify individuals with "long-term" COVID-19 and study scientifically/ statistically whether a specific intervention with light helps. You may see this intervention with light under the names Low Level Light Therapy (LLLT) or PhotoBioModulation (PBM). Want more info? OK, I've covered that starting here.
• We observe a very present tendency in Medicine towards metanalyses and obsessing over gathering huge numbers of participants. "How big is your 'n' ?" That has its pluses and minuses that we won't explore here. Since many years we have applied and had confidence in Small Group Statistical Methods. If well done, as developed by those with names like W. Edwards Deming, it gets the job done quite well, even if 40 participants doesn't sound as sexy as 68,224.

 

 

Starters:

1. This site (in fact, this page and another), will give descriptions & links to the different tests to move things along.
2. As you have learned, these pages have an entry password to avoid mixing things up with other components of the StudyLTCOVID.com work.
3. "Quick Impression" participants get an ID assigned to clearly identify their responses. That ID is actually self-assigned and looks like this: QI- + initials + year of birth. So mine would look like: QI-WJO-1950. This gets used when a test below asks you for your  "Study ID#". Really not very challenging I don't think. In the larger study, these numbers are assigned as part of a randomization process that we won't get into for "Quick Impressions."
4. The protocol is pretty simple:
   1. The plan is to use the lights for 10 days straight and as described.
      1. "as described" means that for some, the 'target' is the Head for 10 minutes each day x 10 days. For others, the 'target(s)' are Head x 10 minutes AND Back x 10 minutes each day x the same 10 days. The goal (as in the larger study) is to see if more skin surface area exposed makes a difference to all those mitochondria floating by in White Blood Cells and others. Participants can express a preference. If really not much time available for all of this, 10 minutes/ day is quicker than 20 minutes/ day. In the larger study, this is of course randomized. What the participants "live" in that larger study can be seen on the Participant's Calendar found here if interested.
      2. "as described" also means knowing what to do with these lights. That has been covered in this article. Whether one holds the lamp holder (doesn't get hot) in one's hand and moves that around one's head, or fixes the light in a stable fashion and moves in front of it, probably doesn't matter. As long as one is close enough to the lights emitting surface, and not sitting across the room from the light or even 1 foot away. Stay close to it.
   2. Day 0 - one does some tests as presented below.
   3. Day 1 - start of the 10 days in a row of the light intervention (and start of forming one's "Quick Impression.")
   4. Day 10 - last day of light intervention.
      1. If one misses a day, (or 6 !) add those back at the end.
      2. So it really is 10 days of light, and not, for example, 4 interventions accomplished during 10 consecutive calendar days, with 6 missed days. If you miss, don't start over. Just pick it back up until you've done 10 days.
   5. Day 11 - a repeat of the Day 0 tests.  I will put all of that for Day 11 with links on another page to avoid cluttering things up here. I'll put a link at the bottom of this page to get there once that is ready. That page will also use the same password as this one.
   6. Day Whenever - a Zoom meeting or equivalent to present and talk over how it went: both "Quick Impressions" and available objective data.

 

"Yes but, ... I already have a question."

 

1. Bring your question to a Zoom meeting. Sending out meeting invites of course requires my having your email address: Used only for the purposes presented here.
2. "My cousin Josephine is interested. Can she come to the meeting?" 
   1. Sure. Bring Jo along. Or send her the link or my email address to get one.
3. Are you a medical doctor? 
   1. You bet. You like Bio's? Here's mine.
   2. So I'm retired and still attracted (as in the past) to ONPWR.
      1. (that's Only Nobel Prize-Winning Research)
   3. But let's be clear. Sending out lights to people around the world does not mean that I have a license to practice Medicine in Scotland, nor New Jersey, nor anywhere else. So your involvement means that we will work together to see if this light intervention appears to have positive effects or not. If you want to bow out, do so at any time. If I didn't think it was safe, you wouldn't be reading this now nor awaiting delivery of your lamp. The usual silly phrases about my not being responsible for any untoward effects of your participation may still apply, but I prefer friendlier exchanges. We'll get an Informed Consent form to you at some point. Read it, asks questions as you feel indicated, sign it and send it back as a scan or whatever. Then everyone concerned will feel warm and protected.
   4. "When will that ZOOM meeting take place?" As I write, to overcome middle of the night participation, probably two this Tuesday, February 7, at 10:30AM Central European Time (CET) here in Belgium, and again at 17:00 to 18:00 my time for those on the East Coast USA, (11AM for them) for example. I'll send out ZOOM invites to those who have shown interest, but here is the ZOOM Meeting(s) info below... 
   5. (These links below for our ZOOM meeting are now obsolete. I left them to give some idea of what that process looks like for those who don't know).
   6. 1st session at 10:30AM CET Join Zoom Meeting https://us02web.zoom.us/j/87041354660?pwd=ZTBISGhQbkM1TWtpcWpaVmtzNStkUT09 Meeting ID: 870 4135 4660 Passcode: 018404
   7. and 2nd session at 5PM CET Join Zoom Meeting https://us02web.zoom.us/j/81947129920?pwd=SjliYUk1eXl1UGtMdHVpTm9OcmF0Zz09 Meeting ID: 819 4712 9920 Passcode: 271082

 

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Day 0 Work. 

Let's get started.

When I questioned back in August to November of 2020, people with "long-term" COVID-19 had been sick on average about 6.6 months. When I asked about Illness Duration more recently, overall it was 24.82±9.43 months. Those who responded that their illness was no longer present, had been sick 13.99±5.26 months. 

 

Perhaps you already answered that illness duration online survey?

Then skip this first link below.

If not among the responders yet, please click the b. link below and give your answer(s). This won't reappear on Day 11 of course.

 

a. If you already answered, here is a link to see a dashboard of some results.

 

b. If not, here is a link to quickly take the Duration of Illness survey. And look at the Dashboard later.

 

Why all the fuss about this?

Because the world has yet to understand and buy into the fact that this little problem is lasting 25 months or so in many who have it. More than just a little nuisance for a week or two.

 

Below are some propsed tests. But first, any such pursuit should begin with a History of Present Illness.  Here is a page to help further our belief and your understanding that it's always the right place to start.

 

 

 

Test 1 - Signs and Symptoms Frequency (5 minutes)

If the intervention with light makes a difference, these may change (as we are seeing locally).

An important note: given all the to do about brain fog (not saying it isn't merited), how long a test takes you to complete is (I think) important data. So in what follows, a chronometer is frequently referred to. Endurance Athletes probably have several, but if not let me know and it will be in the box. 

 

This is not a race where the shortest time over the course wins. Take your time as needed to respond well. But don't get up while the stopwatch runs on to go fix yourself a tuna fish sandwich or a cappuccino!

 

Here is the link to take TEST 1 now on Day 0.

 

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Test 2 - Trail Making Test (Parts A & B, 2 or 3 minutes)

A test originating from 1944 in the US Army, it still is quite effective.

How To Do This: 

1. Print both TMT Part A and TMT Part B (or use the 4 pages provided for Day 0 & Day 11)

2. Starting with Part A, read the Instructions (see copy below)

3. Do the Sample by tracing from Begin to End.

4. Get Stopwatch ready

5. Start when ready, and click stopwatch

6. Once finished, click stopwatch

7. Enter duration.

 

The instructions as they appear on the test sheet look like this:

 

 

The results get compared with established norms in addition to comparing Day 0 and Day 11 results.

 

If there is a slight administrative challenge to getting this one done, it requires:

1. Confirming you've got the paper forms and a pencil or pen to trace with,
2. Making sure you're starting with TMT - Part A
3. Having your stopwatch ready.
4. Recalling throughout to not lift your pencil until your done at #25.
5. Understanding that making an error along the way is no big deal, you just go back to the last correct spot and forge ahead.
6. The key result is the time it took you to get to the end after stopping the stopwatch.
7. Knowing what to do with the results to get them placed somewhere to be retrieved.
8. Then doing the same with TMT - Part B which is a little trickier as you'll see.

 

For Number 7 - where to put the results ? ... is easy because on Day 0 you put them online in a tiny survey which you get to with this link. And on Day 11 there is another link to get to the right spot with another little survey that looks identical, but no need to go there now.

 

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Test 3 - Mental Status Exam (est. 8 minutes)

Most individuals with "long-term" COVID-19 have already lived through one or more negatives in contacts with the extant healthcare system. In some countries worse than others. But when one presents with an average of 16 physical symptoms and 7 emotional symptoms, the existing system was more often than not, quite blown away. So it took 2 years (and still waiting) to get an occasionally compassionate response.

 

"Just another anxious COVID patient" happened all too often. 

The evolution of that initially disturbing setting has nevertheless included not just the acceptance of terms like "brain fog" as relating to real findings, but proof time again that the brain can be affected. From psychology to pathology, there are brain findings.

 

So does our intervention with a specific type of light help with this or not?

To find out, we'd like to compare a before and after Mental Status Exam, specifically tailored for this setting.

 

Nothing about doing this should be taken to assume that the author is simply biased against those with "long-term" COVID-19. Anything but that is true. 

 

Then again, if one had had "brain fog" or other findings related to brain executive and other functions, who wouldn't get just a little bit crazy?

 

Here is the link to our online Mental Status Exam

 

Take it now. Do the 10 days to get your "Quick Impression," then you'll take it again on Day 11. Who knows? We might just learn something in working on this together. Here locally, many think we already have. Here's the link for Day 0 - MSE.

 

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Test 4 - Visual Acuity (est. 4 minutes)

There's a brilliant lady working in Australia, Melinda Fitzgerald. She's not only a physician, but also a physicist with knowledge of Optics that is hard to find an equal of. She's a specialist in Neurotrauma, the retina, and so much more. Here is not the place to expand on all of that.

 

Her results with effects of white light and red light are fascinating. 

 

So why set up some method here for the "Quick Impressions" group to test Visual Acuity? Well, we do it with the larger group locally. And because the intervention invariably has illumination falling on even closed eyes, it gets to the retina. Unlike a tanning bed with UV irradiations, no eye protection is worn during our intervention.  Simply closing one's eyes is more comfortable. When working around those doing the intervention, I don't turn away or wear blinders or dark glasses. Only positive impressions so far.

 

Here is a little background (a page on this site) to help put this in perspective.

 

And to get an idea of how this gets carried out for local participants, here is another article on this site.

 

For the "Quick Impressions" group, who all are at a distance, we'll apply similar tools.

 

• Material that's required and its setup
  • Eye chart (10ft Snellen) placed where light can fall on it
  • Device to measure distance from chart (a string with a knot at each end is provided)
  • Eye obturator (blocks the eye not being tested)
  • Voice recording device (I use iPhone)
  • Reminder to test with and without glasses where indicated
• Carrying out the test
  • Getting in appropriate position
  • Recording responses
  • Sending response recording via email or messaging
  • Entering responses in a specific database locally

 

So no online survey for this one. 

 

But the material to pull this off (not the iPhone!) will get included with the intervention light.

Anyone using a computer, and especially if set up for ZOOM or other meetings or social networks, will usually have the required recording material on hand.

 

As mentioned, most smart phones today, have a recording app that can be used to send an audio recording via email.

 

And That's It for Day 0 !

On Day 11, a final very quick survey is added to the others to pursue possible effects and side-effects of this intervention, as experienced (or not) by "Quick Impressions" participants.

It already exists, and will next be converted to an online survey format, then linked to here.

 

The Day 0 interventions introduced above are repeated, looking for changes after the intervention.

 

 

What about physiology and lab work ?

Yes, some things are missing in this abridged "Quick Impressions" protocol.

To add more will result in having to delete the word "Quick" from that title.

 

And effectively and safely doing tilt tests, pulmonary, cardiac, metabolic and laboratory  monitoring as in the locally applied protocol, just won't be where we're headed.

 

You'll all just have to come to Stavelot and stay for a month or so.

 

If I have an eagerness to add more, I would probably select a peripheral blood smear,

fixed and sent off for subsequent staining, as a very valuable 'Test 5.' It could be done 

Day 0 and Day 11. It could be done before and after a 6 minute walking test. It usually

provides a great deal of information. How to make that happen is another question.

It is certainly doable, even at a distance.

 

And if you in fact did the Vital Signs before and after the 6 Minute Walking Test on Day 0 and Day 11, here is the link for reporting those Vital Signs results.

 

To get at brain issues that impact attention and reaction times, I also have a 3 minute test for that which is quite handy. "Brain fog" of course translates into problems with both attention and speed of reaction. The subject views a video with stopwatch in hand, and sends off the two results via email. A very short online survey can also be used to speedily gather the results.

One can view the test at this link.

 

Below is what that looks like...

 

 

 

Already lost ? 

 

Let me resume. 

• Some participants only speak French. This test and others are covered here for them.
• The process is: some tests before (Day 0), 10 days of intervention with light, the same tests afterwards (Day 11).
• For this test of Attention and Reaction Time (in English),
  • view the video on Day 0 at this link.
    • then report your results using the online survey for Day 0 results, linked to below.
  • view the video on Day 11 at this link
    • then report your results using the online survey for Day 11 linked to below.

 

The "Day 0" online survey is at this link.

 

The "Day 11" online survey is at this link. One of course can't answer these without first taking the test as presented above. Combining the video with a spot for online responses should make such a test quite time efficient.

 

In all of these "just a few more" potential tests, the goal is to take "Quick Impressions" beyond subjectivity to include some added objective measures. Testimonials are used to sell many things.

 

Testimonies don't all stand up very well to closer inspection. Investing time, effort and expense in an intervention, prompts one to try and get everything possible out of it. The return on investment here, should be good information, with all that that means.

 

And in the present work, that means defining the effectiveness (or lack thereof) of an intervention with light for those with "long-term" COVID-19.

 

 

So if you're ready to start your "Day 0" process, use this quick survey to enroll as a participant in our "Quick Impressions" protocol.

 

 

 

 

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