Golden hour (/month)

@JaimeS, you mentioned several studies show Lactoferrin is helpful. Is there a thread about that, or can you give some links? I would like to learn about it.

 

This might be a good place to start: https://forums.phoenixrising.me/index.php?threads/sick-but-never-sick.39474/page-3#post-633909

 

Well, folks, December hit me like a ton of bricks again.

Especially crappy with how brilliant November was! What a fall from grace!

Anyway, I laid off all but the usual interventions and sort of let it happen. I need to see if I'm right about Vit D and other immune markers dropping in order to have any inkling if what I'm doing is at all helpful. I got my second blood draw today and we'll see.

So I'm going to wait for bloodwork -- it came back very fast last time -- and if Vit D has dropped significantly, I'll up that, next. And if WBC count is lower (or anything activated by lactoferrin, specifically) I'll try that, first.

But obviously I'm following last year's pattern. I did Thanksgiving stuff, but all things being equal I've had plenty of time to return to my baseline, and I haven't.

 

I should do some kind of subjective fatigue scale questionnaire. Any suggestions?

[Edit: OMG nm. I'm feeling so crappy that I didn't recall I used the FAS on the 23rd. I filled it out again for today's draw.]

[Edit 2: it's a 34% difference in subjective fatigue. ]

 

Interestingly, according to FAS, I wasn't fatigued in November.

Of course that's ridiculous, but it does support Bell's oft-cited statement that pwME move the goalposts on these sorts of subjective surveys, rating themselves less impaired b/c they know what true impairment looks/feels like.

 

Now that's a statement that could use a lot more air time.

It is the handicap of the robustly healthy able bodied population that likes to impose their views on what ME is like that makes this statement so powerful. You actually have to be sick to realise that it's all relative. There is no binary choice. And choosing between a greater number of options is subjective and subject to a comparison of how one feels today as opposed to any number of times in the past.

Sometimes I think what we need is an anthropology of ME.

 

For many years I presumed that it was this type of remission and relapse that Ramsey was describing originally and that "boom and bust" was merely an association and not a cause. One merely tried to do what the body would allow, within normal bounds.

 

I see this more and more: good qualitative stuff coming out.

This month it's "Socially constructed and structurally conditioned conflicts in territories of medical uncertainty" which gets a lot wrong, but the conversation is very interesting. (The good thing about the Research Roundup: I end up staying VERY up to date...

I'm actually doing better yesterday and today, so I might've just had an 'extended crash' from Thanksgiving -- we had our Friendsgiving on the 30th, so a five- or six-day crash is totally possible.

BTW, doing this is making me so much more aware of how shoddy most research trials must be! I had increased activity between this draw and the last (a big party!). I had to take a different Vit D supplement for a few days. It all should invalidate this draw, honestly. Unless I see a huge difference or a trend, I'm going to presume it's nothing.

 

Yes, From the text you bolded:

The less medical knowledge we
have, the larger the space for cultural imprints becomes

https://www.researchgate.net/public...nflicts_in_territories_of_medical_uncertainty

And then there's the issue of what that imprint in turn says about the culture.
IMO when it's currently medically unexplained we are little ahead of when epilepsy was considered demon possession.

 

OK a few notes!

Nothing significant in the bloodwork whatsoever.

I feel a bit let down but also a bit exasperated with myself. It's not like CBC has shown us anything up to now anyway! I'll keep measuring in case I note a trend, but what I expect to notice now is decreasing well-being that matches nothing on bloodwork.

At the same time, the qualitative observations have really been interesting.

1) The fatigue scale
2) That it really does seem to correlate to weather changes and winter temperatures
3) That it really does seem to correlate to changes in daylight hours
4) Pain symptoms increasing

So I had already noticed that my downturn began abruptly when the weather turned. Northern CA is a lot more like desert weather in that along with temperature changes you have humidity changes as signs that winter has arrived: the start of winter is the start of the 'rainy season' as depicted in some of these studies. The day I started feeling much worse was the first day it rained, and that continued as it rained and rained and rained again. But even after the rain finally stopped, I continued to feel miserable in the cold weather, much sicker and more exhausted, and I had two incidences where I could not warm up, even though the temperature was one I'd been comfortable with before. So it's not just changes in humidity (which is an issue for me) but the change in weather altogether.

Then we had two warm days in a row and I was back to my normal within less than a day. Yesterday the temperature went up to 60F (15.6C) and I felt entirely restored (again, to 'my normal' and definitely not to the increased well-being of mid-autumn).

And I've been waking up earlier and earlier, as though I'm trying to catch the sun. This morning I awoke literally at the precise moment of sunrise. I watched as the sun broke over the hills and it was lovely. This "earlier and earlier waking" has been going on since the weather change also. It's gradual but noticeable. I normally wake up at 8 - 8:30 if no one awakens me. Now I'm about an hour backward.

Finally, pain, which is not normally one of my primary symptoms, is kicking up. It's still not severe, and I don't mean to compare myself to those poor souls for whom chronic pain is an every-moment kind of problem. But I wake up feeling as though I've been rolled down a hill. Old injuries hurt significantly, and ... could it be that my EDS is kicking up? Can EDS kick up? And if so, does it in the winter? Both my neck and shoulders have slipped out of place since the weather changed.

If nothing else, this is going to be an interesting narrative... thanks for being here with me through all the craziness.

I also let Laurie at #MEAction know (far in advance!) that she might lose me in the winter. Last year I was crashed for five, straight weeks in Dec/Jan.

 

At Dysautonomia Conf, where I met a great number of people who had other diseases/disorders, I spoke to someone with this kind of epilepsy.

How they're treated is beyond anything I have ever experienced. Their symptoms are dramatic, out there, and unstoppable. And if it doesn't show up on the right kind of scan, they're considered insane.

The woman I spoke to had been threatened with institutionalization. Her supportive husband had been accused of abusing her by one doctor. Another had the theory that he paid her no mind, and she was having seizures in order to earn his attention. They both spoke about this with that careful poise that you see pwME use to speak about their traumatic experiences, the not-crazy-thank-you coming off of both of them in waves.

This is why the entire edifice worries me. What I'm talking about in the previous post is having observable changes in my well-being but they're not showing up anyplace I can detect with CBC. Surely we should presume we're looking in the wrong place rather than that nothing is wrong!

 

OK I did some quick research to try and figure this thing out. Vit D didn't change even though I felt absolutely flattened and it still seems to correlate to daylight hours. So I went further afield and found these:
___________________________________________________

Suppression of experimental autoimmune encephalomyelitis by 300-315nm ultraviolet light.
Found here: https://www.ncbi.nlm.nih.gov/pubmed/23747577

Abstract
Multiple sclerosis (MS) is a chronic debilitating disease, with lowest incidence in equatorial regions and highest incidence in temperate regions. This relationship is believed to be related to sunlight or UV light exposure. Recent evidence with experimental autoimmune encephalomyelitis (EAE), an animal model of MS, established that this suppression is not mediated by vitamin D production. UV is comprised of three general wave bands: UVC (100-280nm), UVB (280-320nm) and UVA (320-400nm). In the present study we used four lamps that emit different wavelengths of UV: (1) broad band UVB (BB-UVB: 280-320nm); (2) narrow band UVB (NB-UVB: 300-315nm); (3) broad band UVA (BB-UVA: 300-400nm); and (4) long wavelength UVA (UVA-1: 340-400nm). The effect of these light sources was studied in vitamin D-sufficient C57BL/6 mice. The NB-UVB largely accounted for the suppression and delay of onset of EAE by BB-UVB. In contrast, UVA-1 failed to suppress EAE severity at low (∼2.5KJ/m(2)), medium (∼5.0KJ/m(2)) and high (∼10.0KJ/m(2)) doses. Serum calcium and 25-(OH)D3 levels were unchanged after both NB-UVB and UVA-1 treatments. The results demonstrate that NB-UVB (300-315nm) is largely responsible for light-induced suppression of EAE and its effect is not via production of vitamin D.

And, by the same U of Madison, Wisconsin authors:

______________________________________________________________

UV light selectively inhibits spinal cord inflammation and demyelination in experimental autoimmune encephalomyelitis.
Found here: https://www.ncbi.nlm.nih.gov/pubmed/25541149

Abstract
Multiple sclerosis (MS) is a chronic demyelinating disease of the central nervous system (CNS). The incidence of MS is inversely related to sun light exposure or ultraviolet radiation (UVR). UVR was found to suppress experimental autoimmune encephalomyelitis (EAE), an animal model of MS, independent of vitamin D production. The mechanism of this suppression remains to be elucidated. To this end, several elements of an immune response in the spinal cord, spleen and skin during development of EAE were studied. As expected, UVR (10kJ/m(2)) inhibits inflammation and demyelination of the spinal cord. Most significant, UVR dramatically reduced spinal cord chemokine CCL5 mRNA and protein levels. UVR also suppressed IL-10 in skin and spleen but not the spinal cord. As expected from the UVR action on skin, macrophage population and IFN-γ levels are increased in that organ. UVR had no effect on lymphocyte proliferation and IFN-γ in spleen. From these measurements, we suggest that UVR suppression of EAE prevents the migration of inflammatory cells into the CNS by a focal inhibition of chemokine CCL-5 in the CNS and a systemic elevation of immunosuppressive IL-10.


These are the same lamps have been used in skin disorders like psoriasis for a few decades, and they're starting to use them in MS now. Here's a study that came out this year:

__________________________________________________________

A randomised, controlled clinical trial of narrowband UVB phototherapy for clinically isolated syndrome: The PhoCIS study
Found here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5954316/

According to this article,

FWIW, that's what the MS doc thought I had: "pre-MS" symptoms, since she couldn't find MS itself.

They gave half their folk UV treatment and half none. By the end of the trial, 70% of subjects in the UV treatment had advanced to MS, and 100% of the controls had. However, this was such a small study that the difference wasn't significant.

_______________________________________________________

I think I'd buy such a UV light if it were cheap! But they seem to mostly lock into fluorescent lights and they're pretty pricey. Still, figured I'd share what I found...

• http://www.lighting.philips.com/mai...dical-therapy-uvb-broad-band/uvb-broadband-tl
• http://www.lighting.philips.com/mai...band/uvb-broadband-tl/928011301230_EU/product
  
• http://www.lighting.philips.com/mai...band/uvb-broadband-tl/928034901230_EU/product

________________________________________________________

Not just giving in to another winter crash like last year -- will go down fighting!

 

Do we know if ME is also more common in temperate zones?

 

We know zip, as per usual.

If I were to hazard a guess, I'd say that it's possible there's a difference... but in my only slightly-informed opinion, I don't think that low Vit D or lack of UV light causes ME so much as it may contribute to symptoms. So you might say that you'd expect to see more severe presentation where there is less UV light and less Vitamin D, through independent mechanisms. But I wouldn't expect to hear that ME disappears at the equator.

I'm not totally convinced by the Wisconsin papers; they're not on human beings and there are only two of them. But local docs were convinced: you can already get UV treatment for MS in the entire Wisconsin area.

 

Our winter weather has returned, and I am once again flattened.

 

My little artificial sun.

 

@JaimeS Is that the compact model?

Mine downturn came a little early this year, shortly after my last post. I am glad you brought this up. I was heading towards trying this a few years ago and not sure why but forgot about it. At the time a few people with autoimmune diseases I knew who grew marijuana for themselves strongly felt being under the lights tending the plants did them alot of good. I don't remember the light spectrum used for their grow lights anymore. I think I may order the same as you and give it a try.

 

OK I think I may have found [part of] the answer, and my little booklet that came with the compact version gave me the clue!

The verilux light manual says:

Like I feel in mid-autumn?

Don't get me wrong, it's awesome to have more energy, but it did also feel a bit like I'd chugged a line of Red Bulls.

If you're following along at home, I believe a few of the articles I cited above pointed out that UV light helps autoimmune disease independent of Vit D levels so it is now viewed as a good thing 'in and of itself', though I don't think science is entirely sure why.

As someone who spent nearly a decade teaching middle-schoolers science, I am aware both that the angle of sunlight changes in the autumn, and that the scatter through the atmosphere can affect wavelength, so I began to wonder if there was something special about autumn sunlight and/or something particularly disadvantageous about winter sunlight.

So I looked it up, and lo and behold, there is!

There are three classes of UV wavelength: UVA, UVB, and UVC. UVC rarely makes it to earth, so we don't bother with it, much.

UVA is penetrant, going right through your clothes and through several layers of skin, so it will not 'give you a tan' and it won't activate anything on your skin's surface to make our lovely Vit D active.

That's allll UVB, which seems to have numerous health effects beyond Vit D activation. I'd have to read more carefully to be sure, but there are a lot of articles on UBV and Vitamin B12, and I've noted symptoms associated with low B12 are going up this time of year, too -- two days ago, before I read these articles, I had doubled my morning dose of my multi-B. UVB decreases blood B12 so I'll have to be cautious, but I'm wondering if it's 'more efficient use' rather than anything else.

From November to February, there is little/no UVB that 'makes it through' the atmosphere. One study says "effectively none". Though others are less doomsday-ish, all say that this time period you'll get far, far less UVB to reach your skin. Even in the brightest winter sunlight, you're standing in a wash of UVA.

I sat in front of my mini light for 10 minutes as the packaging initially advised, with my glasses off and typed this. Over the course of 10 minutes, the pain at the back of my neck eased, and I perked up a little bit. Now, twenty minutes later, I feel the aches returning. Very interesting.

I ended up skimming and scanning about 20 articles, but here's the one that does the best job of summarizing most of what I found:

UVR, Vitamin D and Three Autoimmune Diseases—Multiple Sclerosis, Type 1 Diabetes, Rheumatoid Arthritis.

And, btw, stumbled across this one:
The beneficial effects of vitamin D3 on reducing antibody titers against Epstein–Barr virus in multiple sclerosis patients

 

BTW:

J Eur Acad Dermatol Venereol. 2009 Oct;23(10):1133-40. doi: 10.1111/j.1468-3083.2009.03245.x. Epub 2009 Apr 24.
Effect of climate therapy at Gran Canaria on vitamin D production, blood glucose and lipids in patients with psoriasis.
Osmancevic A1, Nilsen LT, Landin-Wilhelmsen K, Søyland E, Abusdal Torjesen P, Hagve TA, Nenseter MS, Krogstad AL.
Author information

Abstract
BACKGROUND:
Climate therapy (heliotherapy) of psoriasis is an effective and natural treatment. Ultraviolet radiation (UVB) from the sun improves psoriasis and induces vitamin D(3) synthesis.

OBJECTIVE:
The aim of the study was to investigate the effect of climate therapy on vitamin D(3) synthesis, blood glucose, lipids and vitamin B12 in psoriasis patients.

METHODS:
Twenty Caucasian patients (6 women and 14 men; mean age, 47.2 years; range, 24-65) with moderate to severe psoriasis [mean Psoriasis Area and Severity Index (PASI) score 9.8; range, 3.8-18.8] received climate therapy at the Gran Canarias for 3 weeks. Blood samples were drawn before and after 15 days of sun exposure. In addition, the patients' individual skin UV doses based on UV measurements were estimated.

RESULTS:
Sun exposure for 15 days lead to a 72.8% (+/- 18.0 SD) reduction in the PASI score in psoriasis patients. Although no direct correlation was observed between PASI score improvement and UVB dose, the sun exposure improved the vitamin D, lipid and carbohydrate status of the patients. The serum concentrations of 25-hydroxyvitamin D [25(OH)D] increased from 57.2 +/- 14.9 nmol/L before therapy to 104.5 +/- 15.8 nmol/L (P < 0.0001) after 15 days of sun exposure; the serum levels of 1,25-dihydroxyvitamin D [1,25(OH)(2)D] increased from 146.5 +/- 42.0 to 182.7 +/- 59.1 pmol/L (P = 0.01); the ratio of low-density lipoprotein cholesterol and high-density lipoprotein cholesterol decreased from 2.4 to 1.9 (P < 0.001); and the haemoglobin A(1)c (HbA(1)c) levels decreased from 5.6 +/- 1.7% to 5.1 +/- 0.3% (P < 0.0001).

CONCLUSION:
Climate therapy with sun exposure had a positive effect on psoriasis, vitamin D production, lipid and carbohydrate status.
______________________________________________________________________________________

....would that we could all take a vacation to the Canary Islands for three weeks whenever we felt low!

 

@JaimeS how did you find a lamp with UVB? All of them seem to say «100% UV free», unless you count the lightbulbs for reptiles.

I see the one you have says “moderate UV exposure” or something like that when I read the small print, but of course it doesn’t ship to Norway and everything else is apparently UV free, or just UVA. Not running to get one yet, but would like to know what and how to get it if it is worth a try later.

I feel like I might be missing something here, but I won’t be able to go back through old posts today.