My best friend is the same @hellytheelephant. I wonder if those who have the sinus problems with their ME are more affected immune wise with the colder temperatures. Or are we more arthritic-like.
May/June magic... how does it work?
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OverTheHills
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I improve markedly every year in Spring. In the UK and in NZ, if I can afford (energy and £) both in one year. It's not heat because it stops late June (Northern Hemisphere) and I go back to baseline, and it makes no difference if we have a hot spring, cool summer etc. I can and do go from moderate (nearly housebound) to very mild (no PEM! able to do 3 hour country walk) more or less instantly. And while the 6 weeks or so is great its not so good when it switches off again.
I wonder if this is related to the "ME is blocked by having a cold" effect which I also get, although unfortunately i havent been lucky enough to express a cold for several years. I think there may be a subset that does this because (i hope i'm remembering this right) several people report a Spring Remission Effect. I wonder if there is a plausible mechanism where something in the immune signalling that makes ME is temporarily blocked or distracted by for example hayfever or other environmental change (absence of allergens). I have tried writing to a few doctors who specialise in allergies and people who do pollen forecasting but I get the email equivalent of a blank stare.
I wonder if this is related to the "ME is blocked by having a cold" effect which I also get, although unfortunately i havent been lucky enough to express a cold for several years. I think there may be a subset that does this because (i hope i'm remembering this right) several people report a Spring Remission Effect. I wonder if there is a plausible mechanism where something in the immune signalling that makes ME is temporarily blocked or distracted by for example hayfever or other environmental change (absence of allergens). I have tried writing to a few doctors who specialise in allergies and people who do pollen forecasting but I get the email equivalent of a blank stare.
PeterPositive
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Weirdly enough I sleep less, as I wake up approximately 1 hour earlier, compare to winter time.
In terms of quality of sleep I can't see any changes. My sleep quality always fluctuates during the course of the year.
Though if I sleep less in May/June I feel less the consequnces. During winter loosing a couple of hours of sleep is enough to kill my already poor energy.
PeterPositive
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Exactly. My threshold is very similar .. around 10-15°C
Jill
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I'm exactly the same. I'm heading into winter here in NZ and am dreading it. It looks like it's gonna go below 10 C later this week and I'm already getting worse. It's happen *every* year. By June I'm home bound whereas over our summer I'm so much better. It drives me nuts! I suffer with the cold and have always wondered or kinda rationalised that maybe our small capillaries are more relaxed or something in summer . If I change location to somewhere warm in our winter I always do better also . Last 25 years have been like it
hellytheelephant
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Would like to ask those who improve May/Jun if they first had ME in Winter?
It started for me in Jan/Feb 1993 and J/F has continued to be my worst time of year. This year was the worst for many years, and I hardly left the house for weeks and could hardly walk to the bathroom. My level of function has gone from 15-20% Jan Feb to 25% May
I am not eating differently/taking different meds or opening windows more,,,,
Over the years I have rationalised this as the Winter is the time of year when my immune system is at its weakest. My friend who is better in Winter is plagued by pollen allergies in Summer.....
Researchers should be looking into this.
It started for me in Jan/Feb 1993 and J/F has continued to be my worst time of year. This year was the worst for many years, and I hardly left the house for weeks and could hardly walk to the bathroom. My level of function has gone from 15-20% Jan Feb to 25% May
I am not eating differently/taking different meds or opening windows more,,,,
Over the years I have rationalised this as the Winter is the time of year when my immune system is at its weakest. My friend who is better in Winter is plagued by pollen allergies in Summer.....
Researchers should be looking into this.
Jill
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Another thought I've had about the winter dip is that I also don't catch any colds/flus that are about. I kinda sorta catch something for a few hours ( glands swell etc) more during winter , so maybe the immune system is overreacting to winter virus's but never catching anything . Also and I know this sounds nuts, but when I lived with my folks , I would kinda flare when they got the flu vaccine. Does Anyone else do this ??
PeterPositive
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My first symptoms go back to middle of March 1990
Dechi
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May is also my best month of the year and summer is good also. I had ME during the cold months of winter.
@PeterPositive Was your ME onset via a flu or flu-like?
Both my mild and severe onsets were a month before winter and a month after.
PeterPositive
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Yes indeed.
sb4
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I would bet everything I own on the cause being sunlight.
Light has a massive effect on biology. From setting circadian rhthym, to correct hormone release, to increasing ATP, to improving immune system.
Just search for studies on photobiomodulation or LLLT or better yet read some of Dr Jack Kruses work.
Light has a massive effect on biology. From setting circadian rhthym, to correct hormone release, to increasing ATP, to improving immune system.
Just search for studies on photobiomodulation or LLLT or better yet read some of Dr Jack Kruses work.
Same here, flu-like mild onset and then very nasty flu severe onset.
I had altered microbiota issues 10 years before my ME onset. Very interested in the microbiome research. I often wonder now if I had not had the microbiome changes at 20 years old, would I have ME now. I personally don't think I would have gotten ME. I think the microbiome caused me to get sick with ME years later. Or maybe I have two illnesses.
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Marigold7
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Easy this. I get bad SAD and this starts in August when the "lux" ie the intensity of light starts to decline, until about March, So May and June are the optimal months and many with M.E get SAD. Look up SAD and all will become clear! We are creatures of nature ... So indeed not temp etc but sunlight quality . The good news is that if that is how you react you could well benefit from a Light Box in other seasons.
Heck, heat and humidity used to drain my energy even before I became ill with ME/CFS. I will never understand how people that live in such a climate can stand both. I was born in a state that became very hot in summer, but not humid.
sb4
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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.
Basilico
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CFS (aka WTF disease) truly makes little sense...just when you think you have found the cause, poof...it goes up in smoke.
My husband and I used to live up north. He had terrible autoimmune arthritis in his knees. We finally realized he was only getting arthritis flare ups during the winter. So, we moved down south to Florida, the Sunshine State, land of the endless summer. His arthritis got much better (3 years of remission) but his CFS got much worse!
And he continued to have messed up immune markers on his bloodwork, continued to have psoriasis, so much for sunlight improving ATP and immune system, ha ha.
For him the improvement in arthritis (we think) is due to the barometric pressure, though this last winter he had another flare up.
Sunlight is important, but it is not a cause or a reason for CFS related. Plenty of people living in or near the Arctic circle, with many months of no sun at all and they are not sick. And plenty of people with CFS doing worse in the summer or living in a place like Florida with no change at all.
Surprisingly, in the past 2 years, my husband's CFS was in temporary remission following extreme stress due to last minute greencard/passport problems and getting a severe month-long infection. Then we moved into a new apartment that had substantial mold problems, more extreme stress trying to figure out how to move without losing a 2 months deposit, and the actual stress of moving twice in 2 months, yet during that time and immediately after, CFS remission again! Now there is some real WTF for you. chronic stress + mold = remission...WTF indeed!!!
@sb4 about blue light...when I was spending months up at my family's remote 60+ acre property in northern Maine, no computer or TV, outside in sunshine (and bare feet) all day, I had the worst insomnia ever. I could not sleep well there a single night. As soon as I returned home to spend all day indoors, on TV and/or computer until bedtime, my sleep drastically improved. What would Jack Kruse say about that?
Nothing about this illness makes any sense. All you can do @PeterPositive is enjoy May and June!!
My husband and I used to live up north. He had terrible autoimmune arthritis in his knees. We finally realized he was only getting arthritis flare ups during the winter. So, we moved down south to Florida, the Sunshine State, land of the endless summer. His arthritis got much better (3 years of remission) but his CFS got much worse!
And he continued to have messed up immune markers on his bloodwork, continued to have psoriasis, so much for sunlight improving ATP and immune system, ha ha.
For him the improvement in arthritis (we think) is due to the barometric pressure, though this last winter he had another flare up.
Sunlight is important, but it is not a cause or a reason for CFS related. Plenty of people living in or near the Arctic circle, with many months of no sun at all and they are not sick. And plenty of people with CFS doing worse in the summer or living in a place like Florida with no change at all.
Surprisingly, in the past 2 years, my husband's CFS was in temporary remission following extreme stress due to last minute greencard/passport problems and getting a severe month-long infection. Then we moved into a new apartment that had substantial mold problems, more extreme stress trying to figure out how to move without losing a 2 months deposit, and the actual stress of moving twice in 2 months, yet during that time and immediately after, CFS remission again! Now there is some real WTF for you. chronic stress + mold = remission...WTF indeed!!!
@sb4 about blue light...when I was spending months up at my family's remote 60+ acre property in northern Maine, no computer or TV, outside in sunshine (and bare feet) all day, I had the worst insomnia ever. I could not sleep well there a single night. As soon as I returned home to spend all day indoors, on TV and/or computer until bedtime, my sleep drastically improved. What would Jack Kruse say about that?
Nothing about this illness makes any sense. All you can do @PeterPositive is enjoy May and June!!
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sb4
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It has been shown in studies to do these things. It atleast did something for the athritis (immune) but bad for other things.
I do not think anyone is saying that avoiding sun = CFS. Just that you make it more likely to get it and less likely to recover.
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 consistantly outdoors in florida?
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I get the 6 week or so improvement in May/June.
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.
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.