Poll: Do you have Myalgic Encephalomyelitis (ICC)

I fit the ICC for ME

  • Yes

    Votes: 71 83.5%
  • Atypical ME

    Votes: 11 12.9%
  • No

    Votes: 3 3.5%

  • Total voters
    85

nerd

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Not that it matters in my case, but what exactly is "Intolerance of extremes of temperature" when compared to thermostatic dysautonomia? Why the distinction in part 4?

I wish I had a doctor who would be willing to diagnose me with these criteria and not the "fatigue for more than 6 months" criterion. It's not really much to ask, is it? If they don't bluntly say that they believe it's psychosomatism or depression, I think they still have the same mindset but keep it for themselves. Otherwise, you wouldn't just dismiss this. What risk do they have making a diagnosis and writing a report? They act like they are supposed to try an experimental chemotherapy.

Nobody takes the "fatigue for more than six months" diagnosis seriously because everyone can have it.
 

Pyrrhus

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Not that it matters in my case, but what exactly is "Intolerance of extremes of temperature" when compared to thermostatic dysautonomia?
I believe that "intolerance of extremes of temperature" refers to a worsening of symptoms in hot or cold weather.

I believe that "thermostatic dysautonomia" refers to the body's inability to regulate its own temperature. (i.e. feeling hot or cold with no reason)

I hope this helps.
 

Irat

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I have both,yes there is a difference,For example wind,cold weather,,cold water or hot bath makes me crash,and when in PEM or a MCS reaction I can t keep up my temperature and I'm freezing cold,with 34 degree
 
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wabi-sabi

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The question is: is it a muscle problem or a neurological problem? Either could cause a decrease in strength. Has any research figured out which it is for the majority of PWME who lose muscle strength?
This was a question that came up at the NIH conference today. Lot's of different perspectives on it from scientists in different areas of expertise. And part of the problem seems to be in the interaction between brain and muscles. And one scientist mentioning the mito and metabolic part of the problem too! Very fertile discussion.
 
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NO! I won’t allow it. You will get better and you and your lovely lady will have a wonderful life. To all of us here too.
my apologies for not digesting these comments- surely you dont really have a deadly myopathy....I surely hope not.

Like I sure hope I don't have congestive heart failure, the test result at minute six of my Poor Man's tilt test experiment.

I have felt far less well ever since yesterday's experiment.

do we just keep processing things which feel unprocessible? I guess thats the task. Just keep- on - trucking- somehow.
 
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Oddly, when I had severe fatigue, insomnia would sometimes also be a problem. I would go to sleep at night, and then wake up 3 or 4 hours later, and have "wired" insomnia for a couple of hours or so, and it would take I while to get back to sleep again. And sometimes is was not "wired", but just a feeling that you don't have enough sleep juice in your brain to get to sleep. The brain does not generate that nice sleepy feeling.

I put that insomnia possibly down to sleeping so much during the day. If you are sleeping that much during the day, you may not be tired enough to sleep at night.


Nowadays I get the "wired but tired" issue you mention when going to bed, where I am tired, but it takes me hours to get to sleep due to the wired state. I find taking 5 mg of melatonin about two hours before my intended bedtime really helps a lot. I find with this, I can be asleep in 15 minutes, rather than taking hours to get to sleep. Melatonin does not work for everyone though, and each person seems need their own optimal dose.

Thankfully I am now usually sleeping through the night, rather than getting these insomnia patches in the middle of the night, which are quite horrible. I really have sympathies for ME/CFS patients who cannot sleep well, as insomnia is one of many unpleasant symptoms of ME/CFS.

One thing that's still screwed up with my sleep though is the circadian rhythm de-sync. I invariably go to bed at around 5 or 6 am these days, and sleep until around 2 pm. I find it hard not to slip into this de-synchronized circadian rhythm.
I wonder if epitalon could help normalise your circadian rhythm? I haven't tried it yet but have heard good things about it in this context
 

vision blue

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I meet the criteria now, but only since my reccurrent virus. Before then didnt have cognitive issues or sleep distirbances or temp regulation issues and some others. So i meet these criteria for last third or so of my time with illness whilst the first 2/3rd of my illnes period had profound fatigue and PEM but not others. Still wondering if i really had ME before the virus

I have LESS fatigue now than before i switched. Not sure if its all the excess adreniline now that gives me more energy or something else but i feel more ill now. Also wonder if so ehow those years of profound farigue my body was protecting me and my brain from THIS until It no longer could more likely tho was the blasted hsv1 i believe i caufht from
A henatologists office that pushed me over the edge to cfs.
 
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SWAlexander

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After a muscle biopsy, they diagnosed me with a very rare and deadly myopathy, very similar to ALS. I don't know for sure but I think it's damaged from ciprofloxacin OR damages are going on in ME! Or I have the myopathy on top of everything...
Sorry I respond a little late. Did you ever have had a test for ALD (VLCFA) very-long-chain-fatty-acid? It is an X-linked condition.
 

Nord Wolf

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The ICC is the most narrow diagnostic criteria to differentiate ME from other fatiguing illnesses. I would like to get an overview how many here have ME in accordance to the ICC. You can find the criteria in the file attached.
Don't cheat :)

More information here:

https://me-pedia.org/wiki/International_Consensus_Criteria#References
PENE - 1-5 = YES to each
Neurocognitive Impairments - 1 & 2 = YES to both
Pain - 1 & 2 = YES to both (pain fits myofascial more so)
Sleep Disturbances - 1 & 2 = YES to both
Neurosensory, perceptual and motor disturbances 1 & 2 = YES to both
Section 3, page 3 = YES to 4 out of 5
Section 4, page 3 = YES to 4 out of 4

Results = Yes to fitting the
International Consensus Criteria for Myalgic Encephalomyelitis
 

SWAlexander

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New article on VLCFA / ALD or X-linked (high phytanic acid)

Mitochondrial Abnormalities in Fibromyalgia Suggest Low Long-Chain Fatty Acid Diets May Be Helpful for Some

Case Report

In 2012, he published a case report of a woman with fibromyalgia for whom the standard treatments weren’t working. She was very weak, was unable to get out of bed by herself or hold dishes in her hands to wash them.

First, a muscle biopsy demonstrated decreased levels of citric acid synthase (49% of normal), cytochrome c oxidase (53% of normal), succinate dehydrogenase (72% of normal), and nicotinamide adenine dinucleotide (NADH) dehydrogenase (73% of normal) – all signs of a defect in the mitochondrial respiratory chain.

Genome sequencing next revealed multiple polymorphisms (small changes in the DNA) (POLG1 polymorphisms (C-T polymorphism at 2254, and G-T polymorphism at 3708)) and several mitochondrial genome polymorphisms (1438 A-G, 3992 C-T, 14365 C-T, 14582 A-G, and 4042 A-G) which further cemented a mitochondrial diagnosis.

She improved significantly on a simple formula of coenzyme Q10 (ubiquinone) 200 mg, creatine 1,000 mg, carnitine 200 mg, and folic acid 1 mg taken four times a day. Each was designed to enhance a different part of the mitochondria:

Follow-up Study
Eight years later, the Ambrus group published a follow-up, “Carnitine Palmitoyl Transferase Deficiency in a University Immunology Practice“, which described the results of metabolic workups and treatment plans for 35 patients reporting exercise intolerance and fatigue over time at a university clinic. Many of those patients had been diagnosed with fibromyalgia, most were women, and most had become ill in their 20s and 30s. Quite a few were also diagnosed with Raynaud’s Syndrome, migraine, and gut issues.

Besides fatigue and exercise intolerance, these patients commonly experienced gut problems (diarrhea, constipation, acid reflux), arthritis, headaches, frequent infections, shortness of breath, and others.

The muscle biopsies of these mostly fibromyalgia patients revealed they all had low carnitine palmitoyltransferase activity (at least a third below normal) and about a third of them had another biochemical abnormality. Note that only one patient had low plasma carnitine levels.

Long-Chain Fatty Acid Disorders
Fats are categorized by the length of the carbon chains they contain.
excerpt:
These disorders affect either fatty acid transport via the carnitine pathway or mitochondrial b-oxidation (fatty acid metabolism that takes place inside the mitochondria).

They may also, though, crop up later in life and manifest themselves as rhabdomyolysis, sudden weakness, muscle pain, and kidney problems.

People with mild or moderate forms of a long-chain fatty oxidation disorder may only experience symptoms when increased β-oxidation is needed, such as during exercise or fasting, or if Ambrus is right, symptoms may be present most of the time in fatigue and exercise intolerant diseases like fibromyalgia and ME/CFS.
continue: https://www.healthrising.org/blog/2...ties-fibromyalgia-diet-long-chain-fatty-acid/
 

Wishful

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I had a period when something in meat--I believe it was palmitic acid--made my ME symptoms worse, and this was effectively countered by supplemental carnitine. The problem stopped after a few months of extra carnitine. FWIW, I didn't have any problems with energy production, even during that sensitivity period. I'm wondering if the symptoms weren't from any mitochondrial dysfunction, but rather by the palmitic acid levels outside the mitochondria being involved in some other reactions (maybe membrane production).

I thought this was interesting: "Excess carbohydrates in the body are converted to palmitic acid. Palmitic acid is the first fatty acid produced during fatty acid synthesis and is the precursor to longer fatty acids."