May/June magic... how does it work?

[Orla]

I also have this. It is so weird. I can improve dramatically overnight. It can't be vitamin D, because it is usually an overnight improvement, and I notice it once I wake up and before I have gone outside.

It can't be sunshine/light because again, I notice it when I wake up and before I leave the house (I have blackout blinds and curtains so usually, and a cool-cold house, so usually don't know what the weather is like before I pull up the blinds and pull back the curtains). There is a chance sunshine plays some sort of beneficial role as the summer roles on, but it can't account for the main benefit.

I have used a light box at time over the years (to try to help sleep reversal) and it doesn't have this effect.

It can't be mood (partly because my humour/mood isn't automatically better in the summer, and I don't have mood problems anyway, and my ME does not fluctuate depending on mood/outlook).

It is not heat, as I don't get the same benefit from being in a hot environment, though I do like to occassionally spend brief periods in a sauna (though I'm not sure that is so good for the ME). I generally feel worse if the central heating is on too high (if I am at someone else's house) and I deliberately keep the heating in my own place on the lower side of acceptable during the winter.

But what is it? So weird. Nothing else I have tried has had this effect for me. Unfortunately being in Ireland the weather is usually not good, with a lot of rain. So I have to enjoy it while I get it. We don't get much humid heat here where I am thankfully, and the sunshine days are usually a maximum of 25 degrees Celsius (77 degrees fahrenheit), and normally less, so not too hot either.

 

[Marigold7]

I would cation the use of the light boxes. Some contain way too much blue and no IR. Excessive blue light is bad, it damages mitochondria and slows ATP production. IR and red do the opposite. Best bet is sunlight. We get way too much blue light from our tech these days anyway.

They are life savers for many so please! I mean also those who do nto have M. E. People need to try what might help them freely. And sunlight is lacking in winter of course. I was trying them before I knew had M.E and my eyes woudl nto cope BUT I had great help for years from a bedside lamp that mimicked dawn; wish I had been able to afford to replace it. A firm in the UK called "Outside In" d

 

[Sidereal]

I'm also going through the annual May/June magic. I would love to hear what folks like Ron Davis and Naviaux make of this phenomenon.

 

[Basilico]

I do not know. Maybe you where sleeping near large EMF source, maybe the lack of UV there made less melatonin in your eyes, maybe something else. I do not know why your sleep would suddenly improve but it interests me. Have you spent a lot of time consistently outdoors in florida?

Up in Maine there should not have been a huge EMF source nearby, plus I tried sleeping in different bedrooms, and it was always the same. That insomnia up there always baffled me, because I loved being there, it was my favorite place. I'm pretty sure the UV there in the summer was adequate...I was able to get some nice suntans up there, though it took much more exposure than here in Florida.

I often find that in general, if I have any trouble sleeping, either having the TV on, or watching something on my computer in bed helps a lot. I've heard from other people they fall asleep better when a show is on, too.

I don't doubt that blue light can have negative effects on some people...I know some people are legitimately helped by blue blocking glasses or screens, but I don't think it's a universal problem.

Yes, I do spend a decent amount of time outside in Florida (minimum 1/2 hr per day, though very often it's much more than that). I''m outside more in the winter, as the temperatures are milder (60s-80s) but even in the summer, I do get some sun, just in shorter bursts (10 minutes at a time) and I spend more time outside at night. Our summer sun is extremely strong, much stronger than in the northeast, so you have to be more careful and take it in small doses.

 

[sb4]

They are life savers for many so please! I mean also those who do nto have M. E. People need to try what might help them freely. And sunlight is lacking in winter of course. I was trying them before I knew had M.E and my eyes woudl nto cope BUT I had great help for years from a bedside lamp that mimicked dawn; wish I had been able to afford to replace it. A firm in the UK called "Outside In" d

I, personally would be more comfortable using reptile lights or other such devices. I don't think strong blue stimulus is good without matching frequencies...

 

[Jessie 107]

M

 

[Jessie 107]

Yes I am also enjoying this improvement as well. I had forgotten what it feels like to feel well. I haven't had any PEM either for a week(this is a first for me) I have been able to do more things than usual, but I have been still doing my resting. I don't want this to end, I was thinking I was improving until I found this thread and realised other's improve in May and June too. I don't know how long this will last but I am really loving it and I will be making the most of it.

 

[Marigold7]

I also have this. It is so weird. I can improve dramatically overnight. It can't be vitamin D, because it is usually an overnight improvement, and I notice it once I wake up and before I have gone outside.

It can't be sunshine/light because again, I notice it when I wake up and before I leave the house (I have blackout blinds and curtains so usually, and a cool-cold house, so usually don't know what the weather is like before I pull up the blinds and pull back the curtains). There is a chance sunshine plays some sort of beneficial role as the summer roles on, but it can't account for the main benefit.

I have used a light box at time over the years (to try to help sleep reversal) and it doesn't have this effect.

It can't be mood (partly because my humour/mood isn't automatically better in the summer, and I don't have mood problems anyway, and my ME does not fluctuate depending on mood/outlook).

It is not heat, as I don't get the same benefit from being in a hot environment, though I do like to occassionally spend brief periods in a sauna (though I'm not sure that is so good for the ME). I generally feel worse if the central heating is on too high (if I am at someone else's house) and I deliberately keep the heating in my own place on the lower side of acceptable during the winter.

But what is it? So weird. Nothing else I have tried has had this effect for me. Unfortunately being in Ireland the weather is usually not good, with a lot of rain. So I have to enjoy it while I get it. We don't get much humid heat here where I am thankfully, and the sunshine days are usually a maximum of 25 degrees Celsius (77 degrees fahrenheit), and normally less, so not too hot either.

It is the change in light intensity simply. Unless you live totally undergound 24/7 it affects. Eben the length of daylight. Look up SAD ..I am in Ireland too .. just enjoy it as it fades come August.

 

[OverTheHills]

The pattern has been more or less the same since becoming ill. The winter is by far the worst and seems to start in middle of Dec each year. The last 4 years right on the 15th to the day. This year it did start with the closing of the windows for the year but didn't get better with opening them. After the spring improvement the summer is worse again but not as bad the winter. In the fall I improve some from the summer but not as well as the spring. Then Dec starts up again and hits full steam.

I've been in the same location and apartment so don't know if a different environment or location would help. Would love to know the answer to this. It follows the pattern no matter what I do.

Same here although as time has gone on I have had other comorbidities muddle things slightly. One bonus is it makes it even harder for the docs to argue psychiatric or false illness beliefs.

I'm also going through the annual May/June magic. I would love to hear what folks like Ron Davis and Naviaux make of this phenomenon.

Me too I think it would be worth their while to test us in May and December and see what changes with us compared to normals and people with ME who dont have a strong seasonal pattern. @Jonathan Edwards are there any autoimmune diseases where there is a strong predictable seasonal pattern? Can you speculate anything about a possible broad mechanism for this ME subset?

It is the change in light intensity simply. Unless you live totally undergound 24/7 it affects. Eben the length of daylight. Look up SAD ..I am in Ireland too .. just enjoy it as it fades come August.

sorry Marigold but I am going to disagree with you here. The light intensity is really high in July and the last week of June but the remission or good patch is over. Also recently Ive been living in NZ where the light intensity is really high even in winter. Same seasonal pattern adjusted for southern hemisphere.

I'm not saying that SAD is not real and some people here surely will benefit from lightboxes. just for some of us the May June thing is not SAD.

 

[Marigold7]

Same here although as time has gone on I have had other comorbidities muddle things slightly. One bonus is it makes it even harder for the docs to argue psychiatric or false illness beliefs.


Me too I think it would be worth their while to test us in May and December and see what changes with us compared to normals and people with ME who dont have a strong seasonal pattern. @Jonathan Edwards are there any autoimmune diseases where there is a strong predictable seasonal pattern? Can you speculate anything about a possible broad mechanism for this ME subset?

sorry Marigold but I am going to disagree with you here. The light intensity is really high in July and the last week of June but the remission or good patch is over. Also recently Ive been living in NZ where the light intensity is really high even in winter. Same seasonal pattern adjusted for southern hemisphere.

I'm not saying that SAD is not real and some people here surely will benefit from lightboxes. just for some of us the May June thing is not SAD.

You misread me but there we are. I did not say we have SAD ! referred ypou to that site as they explain it all far more skilfully than I have energy to do . Open mind please!

 

[mermaid]

I don't improve suddenly in the summer, but it does normally feel like a wave that reaches its peak in June for me. I am usually not doing too badly until after Christmas when I go down with a big bump.

Sadly this year, I am not doing well in May, for the first time for years. I am struggling physically and mentally despite managing to 'fix' or improve some of my symptoms. I have had a lot of stress over months, which has now somewhat resolved (2 eye ops, a colonoscopy and another physical diagnosis). Hopefully this is the cause and I will begin to improve again.....

 

[Marigold7]

I don't improve suddenly in the summer, but it does normally feel like a wave that reaches its peak in June for me. I am usually not doing too badly until after Christmas when I go down with a big bump.

Sadly this year, I am not doing well in May, for the first time for years. I am struggling physically and mentally despite managing to 'fix' or improve some of my symptoms. I have had a lot of stress over months, which has now somewhat resolved (2 eye ops, a colonoscopy and another physical diagnosis). Hopefully this is the cause and I will begin to improve again.....

I hope so too. My life is in chaos this year after what turned out to be a bad house move as the agent lied. Now I am seeking a house and facing another move so am not a happy bunny but learning to enjoy and value the tiniest things as the days pass. Very tired though

 

[mermaid]

I hope so too. My life is in chaos this year after what turned out to be a bad house move as the agent lied. Now I am seeking a house and facing another move so am not a happy bunny but learning to enjoy and value the tiniest things as the days pass. Very tired though

House moves are very stressful @Marigold7 even without illness, so I am sorry you have to move again in these circumstances.

 

[Orla]

It is the change in light intensity simply. Unless you live totally undergound 24/7 it affects. Eben the length of daylight. Look up SAD ..I am in Ireland too .. just enjoy it as it fades come August.

It isn't. August is generally my best month, but it depends a bit on the weather. If the weather is bad I won't get the benefit regardless of time of year. The change for me can happen overnight before I have any knowledge of, or effect from, sunlight (as I have blackout blinds and very heavy curtains, so my room is very dark until I get up).

I think the dryness/lack of dampness is a factor for me, as I get similar good days in the winter also if the day is clear (even if I am indoors all day).

 

[sb4]

I don't improve suddenly in the summer, but it does normally feel like a wave that reaches its peak in June for me.

The sun reaches its peak mid June also. So the most light intensity and most wavelenghts are at this time.

It isn't. August is generally my best month, but it depends a bit on the weather. If the weather is bad I won't get the benefit regardless of time of year. The change for me can happen overnight before I have any knowledge of, or effect from, sunlight (as I have blackout blinds and very heavy curtains, so my room is very dark until I get up).

I would say it is. You say your room is very dark until you get up. This is very good for circadian rhymth to sleep in pitch black. You seem to then indicate you open curtains once awake. This = more light entering your eye = stronger hormone stimulus...

 

[rosie26]

Also recently Ive been living in NZ where the light intensity is really high even in winter.

@OverTheHills I have an amazing memory of Mt Ruapehu on one of those days where the light was so intense. Mt Ruapehu was covered in snow and the way the light hit the snow covered mountain was absolutely glorious. I was travelling at the time on a train up the North Island and the driver stopped in view of the mountain and we all got out. I was spellbound by the beauty of that day. We stopped for 5 minutes but I will never forget it.

 

[gabriella17]

This is also typical with people who have bipolar disorder: the manic or hypomanic episodes (increased energy, decreased need for sleep, feelings of well-being, creativity, agile thinking, etc) tend to start in the spring and extend through the summer. And then comes the other side... depression in fall and winter. Also, SAD - seasonal affective disorder - the depression happens in the winter!

 

[PeterPositive]

Now there is some real WTF for you. chronic stress + mold = remission...WTF indeed!!!

I hear you.
Problem is those WTF moments are likely due to staring at the "wrong" variables. Maybe neither stress nor molds have such impact on your husband's issues. I also thought stress and diet would play an important role in my issues and ... they didn't so much! Certainly not as much as I thought.

Weather conditions seem to have a larger impact than anything else.

Nothing about this illness makes any sense. All you can do @PeterPositive is enjoy May and June!!

Definitely
Embrace the chaos!

 

[Orla]

I would say it is. You say your room is very dark until you get up. This is very good for circadian rhymth to sleep in pitch black. You seem to then indicate you open curtains once awake. This = more light entering your eye = stronger hormone stimulus...

No I pretty much never put up the blinds or pull back the curtains when I wake. I usually lay in bed for a while (minimum of half and hour, usually an hour or longer) before I get up and roll up the blind. It takes me a while to adjust to the light so usually I'll put the blind up first, go back to bed for anything from an hour to a few hours depending on the day, and then pull the curtains back. This process is a bit faster if I feel good, but it takes me a while to get going in the morning so I normally spend an hour or more in bed to adjust to being awake.

It is not that I think the sunlight might have no beneficial effect over the course of the summer, but it can't be the main answer if I feel this effect before experiencing the light, and I don't get a similar benefit from a light-box.

Someone told me before that it might be to do with atmospheric pressure. I think that there is usually good whether when the pressure is high and bad weather when it is low. I often literally feel lighter when the weather is good, though I wonder if circulation is better in good weather or something? My limbs generally feel lighter in better weather.

 

[PennyIA]

I'm the opposite-ish. My flare up this time started in May. And 3 years ago, my last major flare up, was from May to August. Funny enough, no issues for the last two summers.