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@Robert 1973 - Thank you for sharing such a beautiful song. I miss riding my horses.

Hmm...hopefully this is fall-out from the Independent article :)

They no longer feature a dropdown banner tab where you can "shop" for #MEACTION t-shirts, etc. If you go to the MillionsMissing campaign page and scroll down, there is link. The account is also still accessible just by going to Zazzle and searching MEACTION or MillionsMissing.

Reduced functional capacity is a big component of PEM for me. Exacerbation of symptoms (physical and cognitive) means that I cannot read, I cannot tolerate sound, I'm in bed...so functionally I'm not showering, I'm not doing the dishes or cooking. It becomes very difficult to perform basic...

Wish we had more studies. My background follows this sort of progression. I got ill eight years ago at 32 and had 2 bad years with marked improvement after the 3rd year. I was told I had a thyroid condition and allergies. I did two years of immunotherapy and begin feeling much improved...

That's a hard one @Subtropical Island. For me, this is a major symptom. Over the past eight years, I only have 2-3 days per year where I feel good when I wake up. I think it is a core symptom, but at the same time, we know we are all different and diagnostic criteria is based on normative...

Yes, I have IBS flares specifically during crashes. My recent experiment with the ketogenic diet has helped with this.

Given your focus on the inflammatory nature of ME/CFS, will your research center be pursuing any drug treatment trials? If so, which ones are you considering and why would you consider these treatments as potentially beneficial?

Right, but Jen was criticized for featuring her improvements with Valcyte on "Unrest" too. I understand the concern, its just that most people - doctors included - do not understand the basics of this diseases, let alone the finer points. I though Omar did a great job of pointing out that they...

I believe the message she is trying to spread is for doctors to inquire, investigate, and try with this disease...not just turn patients away. No, there is no cure, but neither must we all be sent home helpless.

@Cheesus - I remember you being quite down about the state of your situation a few weeks back. You have been highly effective and accomplished something great, all from your bed. A huge kudos and pat on the back for you. I hope your successful efforts help raise your spirits.

Somedays the analogy works better than others. I've found kinship with a few other friends who are also "spoonies." The common theme is that we are chronically ill, and while our diseases are different we can at least connect and find commonality as "spoonies." Plus, there is some...

I thought about the barbarism too. But, isn't there some common sense in this study too? If you have a TBI, signaling pathways can be disrupted (to the GI or other organs). When things don't run right in the GI, havoc can arise and potentially compound problems over time. If there is a...

I really appreciate how she is able to unify concepts about the disease...dare I say, it gives me hope. Thank you for posting it today! Of note, she also discusses a bit about Rituximab's niche in ME/CFS treatment.

@Kalliope already posted this interview in the "News from Norway" thread. Mady Hornig provides some interesting insight into subtypes, how the gut is involved in immune function, hypothetical treatments, and disease progression. I hope by giving this interview its own thread, it may garner...

Just finished the book. It's good, it's advocacy. It's simply written and the text is spaced...plus it's very short. I will be passing this along to a friend in the medical profession. It does a good job of explaining our experience, she specifically makes the point that this is a biological...

I don't understand HRV and how to properly monitor it. I should clarify that I was using Oura's Resting Heart Rate tracker. I noticed that when my HRH was between the upper 40's and low 50's, I was doing better. If it began to creep up and get into the 60's, I was in a crash.

If POTS is a major symptom, the Oura is not a substitute for a HR monitor. It has worked for me, but my POTS is mild/intermittent. The small heart rate monitoring that Oura provides helps me know my baseline for a given day. Typically if it is high, it's a sign that I'm vulnerable for a...

Oura is releasing a new model in April 2018, much smaller than the current model. I believe it will include better HR monitoring options. ETA: https://ouraring.com/?utm_campaign=L1EO&utm_medium=email&utm_source=intercom

I have had episodes, not as severe as what you mention. It comes out most in my hands, when I'm trying to type or text and movement becomes jerky/spastic.