StudyLTCovid.com

"The more you make demands on people, the farther away they will stay from you."

So instead, of the full blown or even the "Quick Impressions" protocols,

how about this?

Below, find a summary from our Q&A session held Sept. 6, 2023. (11 minutes at playback speed 1.0x).

The "How To" components of the "Minimalist" protocol will follow, but here's an introduction.

(One can select the playback speed with a click at the bottom right. It comes up at 1.2x which generates a somewhat mouse-like quality for my voice. But it lasts less long of course).

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Just a quick overview to see what it looks like.

It's design has proved helpful for both head and back interventions.

It's stable, but the red-handled spring clamp seen below is essential !

Otherwise, it risks finding its way to the floor.

Here I clip it at the edge of an open desk.

Whatever works, but remember to use the spring clamp.

The PVC clip applied to the smaller vertical pipe allows for some adjustment of height by sliding the smaller PVC pipe (32 mm) inside the larger one (40mm).

The other thing to remember is that the 1.25 cm thick wooden "bump" in the center of the lamp reminds one to stay up close to get the desired energy (40 Joules/ cm²). Remember, it doesn't cause burns. If one moves back two feet, it still looks "red" but much less energy transmitted. While one doesn't need to stay in permanent contact with the "bump," staying up close is the right idea. So is turning slowly from side to side with one's head fro example.

(Other videos about that are available on this site, and which you may have already seen).

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In case someone wants to do a little DIY, below a little summary of the associated costs when materials are purchased here where I am. (Still had some PVC pipe glue, so excluded it here).

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The objectives are:

• A stand that holds the lamp during an intervention
• Avoiding arm fatigue
• Preventing breakage
• Embodying that in a format that doesn't way a ton (it's often shopped around the world).

Our solution: the 'Stability Stand'

(call it what you like, but below is its description and tips for usage) ...

I suggest watching it FullScreen.

If you want a link to share with others, here it is:

The Stability Stand for use with StudyLTCovid

https://www.loom.com/share/dfa6aa5ab1bb4e48bea3e31a8a818282?sid=bcc4706a-1680-4dcb-a736-5377968d1edf

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• An Introduction to the "Minimalist" Approach: That's done, see above on this same page or this link if you missed it.
• The intervention with light is best carried out using a stand which is light in weight (good for shipping or carrying around) but sturdy and stable (good to keep the thing off the floor). So that's done too. Missed it? Here's a link to light construction materials.

New Topic #1: "Where do I shine this thing ?"

Actually not a new topic (see other articles or work through the Everything Index) but let me explain a bit more.

In the other protocols (i.e., Full 31 days and 'Quick Impressions') already presented here at StudyLTCovid.com participants are randomized to apply the intervention to "Head Only," or "Head & Back." Quicky summarized: Does the region exposed make a difference in a participant's outcome ? Does the total surface area exposed make a difference in the participant's outcome ?

So for those joining the Approach #3 "Minimalist" protocol, I could do the same think. I could use a randomization list and let someone giving me a hand contact the participant too inform which area is "theirs" during the 10 days of intervention. I'm not told by my "helpers" about that choice, and the participant doesn't tell me until its all over. Sounds very "Scientific Method" because it is.

But wait. The above introduction to the "Minimalist" protocol informs that that too will be left up to the participant to choose.

So in keeping with that promise or method. Each participant can decide. "Head only" takes 10 min/ day; "Head & Back" takes 20 min/ day. So the choice is hers/ his based on components like time limits, possible beliefs that "more is better," and probably others. Perhaps just a subjective feeling about it.

And of course, HOW to apply the light to either or both of these areas needs a few words as well.

The "Head Only" intervention.

Initially in this study, a participant simply helf the device in hand, and moved it around her/ his head. Always of course keeping close (or "nearby") contact between head and lamp using the 1.25 cm "bump" in the center of the lamp as a reminder. Again, no heat, no burns, etc.

This "How To Do This" is completely covered on the Interventions page.

Have a look. You might prefer this.

Here's what we discovered so far:

PROs:

• The lamp and its holder are all you need (in addition to you). 
• The path to move the light around one's head is clearly shown at the same link for Interventions.
• For the back, clipping the light's holder to a chair back with its attached clip, usually seemed to work.

CONs:

• Consistent with their having "long-term" COVID-19 (LTC), the participants developed "tired arms syndrome" (TAS) or if that's too fancy, just got pooped out moving the thing around the head.
• How well a given subject may carry out the path around the head and distance from the scalp might of course vary. (When the person is in front of me, I provide polite, discrete little reminders. But when they're at home ? Who's to know ?

Response to TAS and all the rest ? 

Well that's the lamp stand as described above or at this link.

Stability, (I refer to it as the Stability Stand), and no tired arms. Movements in front of the lamp become easier and more consistent. 

Here it is again, in case somehow you missed it elsewhere.

No matter how one holds the thing . . .

The important things are:

• Stay close to the lamp. Bumping into the little "bump" in the center of the lamp is a nice and painless reminder.
• Do a little slow, left to right motion during the 10 minutes of intervention.
  • To do this for the head, simply face the thing at forehead level and comfortable go left to right for at least 5 of the 10 minutes.
  • For the back, same principles. If using a chair, place a 'slippery/ slidey' piece of cloth (a towel or lining material if you have some, like silk for a suit) under your hips. That facilitates that "left-to-right" action in front of the lamp. This whether it's clipped to a chair back, or mounted on the 'Stability Stand'. Your target is at a level about half way between top of hips and bottom of ribs when felt out laterally. Questions ? Ask !

I think the best way to get a feel for this is to watch:

Me doing this with my 3-Lamp Stand device that I use for other protocols than this one ...

That same page also has a video that explains this method in French, should the need arise.

Yes, there will be more explanation for those doing Approach 3 - the "Minimalist" Protocol. 

Article(s) to follow.

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So just imagine ...

You received your material.

You've set up the Stability Stand.

The light is attached to it.

The adapter for the EU plug even plugs in where you are.

You've decided whether your a "Head Only,' or "Head and Back" person.

Your ready to go except ...

Each day of the intervention may provide you with 'data' as well as light.

Those 'data' in the present situation are mostly subjective (we decided) and may include:

1. additional questions of a "How To" nature, or problems with the equipment
2. things you are noticing on any of the 10 days like:
   1. Changes in physical status
   2. Changes in emotional status
   3. Changes in relating to/ functioning in your environment
   4. Changes in day-to-day findings of any/ all sorts

Of course, by day 8 or so, days 1 or 2 may have been a bit forgotten with respect to some details. Just a guess or example.

So I've created a safe place where a participant can "place" such objective data.

- It will ALL stay private until you decide otherwise.

- It comes to me for 'storage' but nothing more until you decide otherwise.

- It is not available in an article on this site, until you decide otherwise.

- It's not shared with other "Minimalists."

Here's the daily (for 10 days) survey:

• Think of it as your Personal Journal during the "Minimalist" protocol.
• A link I provide privately will get you to it.
• It's not at all a "Multiple Choice" or "Strength of Response (Likert)", nor "Dates and Durations" kind of thing.
• Instead, blank spaces in a few categories (the 'data' mentioned above).
• I'm currently setting this up on SurveyMonkey, but if your first reaction to "survey" is = "nuisance", forget that and think blank pages in your Journal.

I'm doing this for both participants and myself, and primarily to prevent data loss, especially with subjective data.

To know who's completing her or his Journal, in each day's entry you'll be asked to enter:

• The Day of the Intervention (e.g., Day 1 or 6 or 10, etc.)
• The actual Calendar Date of your entries
• Your Study ID# (now what is that ?) - to know on my end who is 'talking', each entry asks for you Study ID#. It's a combination of "Min + Initials or Pseudo +Year of Birth," separated by hyphens. So mine would be: Min-WJO-1950. That simple. Use your initials, use a pseudonym, whatever..., but write it down and don't forget it. Avoids confusion that can rapidly become massive in the data inbox.
• "Head Only" or "Head and Back." While you can do it, it may be very illogical to switch from one to the other area of light from one day to the next. Select, then stick to it. After this is all over, you can switch that around if you want.

Then, and exactly how you would like to respond (or not) the 'data' mentioned just above:

• Changes in physical status
• Changes in emotional status
• Changes in relating to or functioning in your environment
• Changes in day-to-day findings of any/ all sorts

It's not Multiple Choice, but instead, you write it out just like you want.

If you prefer doing this daily survey or journal in Dutch, here is the link to that survey:

https://nl.surveymonkey.com/r/VJCGHVQ

Too pooped out to do this ?

In the setting of "long-term" COVID-19, we have all learned what this means.

Some, obviously, more impacted than others.

This is not about sloth and its avoidance. (That would be rather judgemental).

It's not about hammering away for maximal completion rates.

It's about doing what is possible for a participant on any given day of the intervention.

Enough daily stress exists already. . . , let's not add to it.

Just can't swing it on any given day to answer that question "How's It Going ?"

Come back tomorrow when batteries are charged and the steam is back up.

No need to move back to the previous day, just take it from the actual day of intervention where you've arrived.

If any problems crop up in trying to go back multiple times to this online Journal, let me know.

And again, I intend to do everything I can to keep your responses totally private.

Having thought that option over and prefer instead to just send me an email update every now and then, and not use the Journal ?

That will be fine. 

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