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Thank you @MErmaid and @Trish Great information. It's so hard - determining whether to push a little or not to push at all and where is the middle ground? She is top of her current class in grades, with no work, so boredom plus fatigue makes it that much worse for her sitting in class. When...

Our 8 year old is still missing a lot of school between muscle spasticity in her calves and stomach, her headaches, and her low energy and the related emotional meltdowns. The school is very happy to work with us on any plan for our daughter (right now we are putting together a 504 plan). Her...

I believe each study has to be analyzed on it's own. For example, the early research on CoQ10 did not have the benefit of the knowledge about the quality issues or the absorption issues. Studies that found supplementing with CoQ10 had little to no impact might actually have been a quality or...

Thanks @Alvin . I completely understand. I'll do the research on K2. I really appreciate the heads up.

Thank you @Alvin . I'll ask her doctor about it. Since I passed Factor V Leiden heterozygous onto this little one, her doctor might frown on Vitamin K2 due to increased clotting risk.

Thanks @Mij . Will do

Thanks Arnie! Great information. I don't tend to worry about things. I take in information, evaluate and then try to figure out the course. Knowledge is power. I ask questions, I ask about possible tests, and bring in medical journal articles to discuss at appointments. I am not the...

Great question! I just went back to her last blood test. She wasn't tested for ferritin. I then went back through all her labs for the last year from the hospital and it doesn't look like anybody tested for ferritin. On Monday, I'm going to ask for a lab slip for this. We can then hold onto...

Thank you @Valentijn . Her folate was recently tested at the same time and was listed as normal at 22.0 ng/ml with the range being >7.1. You are correct, she doesn't like meat or vegetables or anything with flavor ..... I hadn't thought of an art class instead. She would absolutely love that...

I'm looking for suggestions on how to help our youngest daughter who is now 8 and suffering from crushing fatigue. Our teen daughter and I didn't have the fatigue this bad at her young age. Any suggestions would be appreciated. In the last few months, she has missed a lot of school, stopped...

Thank you @Jonathan Edwards . I agree that the original trial sited at the beginning of the thread is very thin and has recommendations that are questionable and unsupported. I don't believe hyper coagulability by itself gives rise to ME. Our daughter who does not have FVL has debilitating...

I have Factor V Leiden (FVL) heterozygous mutations (rs6025) plus the FV R2 heterozygous mutation (rs180059). FVL heterozygous by itself increases the risk of thrombosis by 3.5-4.4X. The combined FVL plus FV R2 compound heterozygous mutation makes one significantly more prone to blood clots...

Thank you @MErmaid for starting this interesting thread. And thank you to everyone who provided insight. Some topics provide a foundation that I was missing. I'm glad for the lesson. :thumbup:

It's something we definitely need to explore further. With the OCD issues and the fear coming into play, I've been reading about the four steps they often use for kids who are so afraid of eating certain foods, they'll actually starve before eating them. First step is making a list of the...

Two of the five of us in our family with MitoD have what might be described as ARFID. "Avoidant/Restrictive Food Intake Disorder (ARFID), also known as “extreme picky eating,” is an eating disorder characterized by highly selective eating habits, disturbed feeding patterns or both. It often...

Besides the normal myoclonic jerks that just appear out of nowhere, I also get jerks that happen unexpectedly when I move. For example, I can move my mouse and my hand will jerk past where I wanted and my pointer is not where I wanted it, I can grab for a cup and jerk to the right knocking...

I realize some people in the CFS/ME community look down on the Jackson Laboratory. Despite the fact that JAX is a late comer and there are some politics going on here that I don't understand, JAX has received a large amount of cash money from NIH, so it's important to keep an idea on what they...

The woman sticking up for the man with Parkinson's is that friend/partner that we all wish we had. OK, maybe not the exact language, but the idea that we can speak up loudly and forcefully. For decades I tried to go to my doctor's visits on my own, explain symptoms in a well organized way to...

Yes, I have this too. If I try to accomplish too much during a day, it will come on. Or if I go into a crash. I won't even notice I'm doing it in the house -- then I walk outside to the car and it's noticeable that I'm weaving. My grandmother died of what was called an "MS like disease"...

Thank you everyone for responding. I'm going to let the poll run another week before I provide a few observations and related studies. It's a complex issue. I'm waiting a week, partly for more data (poll participants) to come in and partly to use my limited energy this week in preparing for...