Hi friends and family. I (Chris) have been responding to a lot of people who have been reaching out about Camille and our family, and Camille and I thought it would be best to share updates via a newsletter. I added you to this list if we've discussed in the past 6 months, even if only briefly, the difficulties our family has been facing. I don't know how often we'll send an update. I also didn't want to spend too much time writing this (and future updates), given my limited free time, so the transitions might seem abrupt and the writing unpolished. I have a lot I want to say but am trying to keep it brief-ish. Some of the info below has a lot of emotions connected with them, but that doesn't always come across in the email because it's too hard to communicate that all in an email. I acknowledge this. :-) Thank you for bearing with me!

If you want future updates, please sign-up for the mailing list at https://camille-updates.beehiiv.com/. Feel free to share the link with others. You can also share this post by forwarding this email or sending them the link to view the post online.

First update is below.

Camille has been diagnosed with a debilitating chronic illness for which there is no known cause or cure. Her suffering is extreme but she is enduring well. We moved to Northridge to be closer to our parents, and are getting used to life here. We are praying for a full recovery and are also just starting the journey of getting specialized medical care. While we do not want to be in this situation, we know that God is still good and can make good come out of bad. We have seen him do that already and know he will continue to, regardless of what happens with her illness.

We appreciate everyone who has reached out, who has prayed for us, who has visited us, who has brought or bought us food, who has helped in other ways, and the many who have offered to help but I have not taken them up on it. It means so much to us. We feel your love. Thank you.

So many have asked how they can help. There is not a lot you can do, physically, at this point. We are hoping Camille improves enough so she can tolerate visitors better. In addition, we would appreciate prayers for healing and endurance.

While I never would have said something like this could not have happened to us, I never expected it to actually happen, but here we are! We trust in our Lord regardless of our circumstances, and I look forward to the day when Camille and our family will experience perfect joy in the presence of Jesus.

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Camille and family status

She is not doing well, symptom-wise, but she is enduring day by day. She is experiencing an extreme amount of suffering but is trying to stay in good spirits. She does a better job than I would be able to do. I cannot emphasize enough how difficult this is and how well she is doing considering the circumstances. We moved to Northridge to be closer to our parents. They have supported us a lot and that has helped immensely. I have to commute 2 days a week; it's not fun but I am very grateful for the flexibility my job affords. The kids like their new schools and seem to be doing fairly well considering the situation.

"So she called the name of the LORD who spoke to her, 'You are a God of seeing,' for she said, 'Truly here I have seen him who looks after me.'" Genesis 16:13

This passage has had so much significance for Camille even before her symptoms got severe. Whether or not she is 'seen' and understood by those around her, her God sees her. He knows her intimately. He knows her heart. He knows her suffering. She finds great comfort in that. This passage is especially relevant now due to the nature of the illness, as it leads to both extreme isolation and also to frequent misunderstanding by others.

Symptoms and impact

Camille has profound fatigue, extreme noise sensitivity, extreme visual sensory overload, and post-exertional symptom exacerbation. She is in bed 99% of the day right now and is usually wearing earplugs and earmuffs. She is unable to listen to or read anything without her symptoms getting worse, so she simply lays in bed. She whispers about 100 words a day and I have not heard her use her regular voice in about 3 weeks.

Healthcare status

Camille was diagnosed with myalgic encephalomyelitis (colloquially known as chronic fatigue syndrome), abbreviated ME/CFS. This is a chronic illness that ranges in severity. Camille is on the 'severe' to 'very severe' end. Neither the cause nor the cure is known. It is a syndrome that covers a set of symptoms; no biomarker has yet been found, so diagnosis is based on these symptoms. There could be multiple causes and cures for these symptoms, depending on the patient subgroup. Approximately 5% of people recover completely. The rest have lifelong symptoms that can fluctuate in severity.

Research funding on this illness has been extremely low for decades for reasons I won't get into, but it is actually starting to get more funding and clinical trials because long Covid has significant overlap with ME/CFS, and Covid research gets a lot more funding.

We were able to meet with a specialist and will start trying out pharmaceuticals to see if any help. It could be a very long process of trying different drugs and seeing what works, if any do at all. We are hopeful for improvement but also trying not to put our hope in improvement or recovery. It is a difficult stance to hold. Prayer for that is appreciated. One thing that is especially difficult on both of us is when her symptoms worsen, which is sort of the trend right now. We are praying it stabilizes.

ME/CFS resource

Here's a 12 minute video about basics of diagnosis, treatment, prognosis, etc. It's over 5 years old and treatment and understanding have advanced a bit since the video was made, but it is still a great summary.