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I tried mirtazapine at 7.5 mg on two occasions as a sleep aid to avoid waking up in the middle of the night. It worked exceptionally well in that I was so sedated that I could barely muster the energy to roll over in my bed, but similarly to your experience I had the most terrible, intense...

In a civilized country that is among the world’s leading economic powers, how can malnourishment be considered as a natural cause of death?

My sincere condolences for your loss, Robert. Thank you for taking the energy to write such a well thought out and thorough description — I believe that analogies like the one with the biking race that you used are key to getting people to understand the presentation of our symptoms. For what...

Fair point, this is indeed what it does feel like — at least for mild to moderate ME/CFS.

Is exhaustion in ME/CFS not some specific kind of sickness behaviour similar to that which kicks in when someone is down with an infection or other illness (which as far as I’m aware doesn’t have to do with ATP / energy production)? Then the question is not so much what it is but what triggers...

In over a year and a half, none of the doctors at the clinical nutrition unit at the hospital that specializes in severe malnourishment where I’m being followed have ever mentioned that lying flat is an issue with a NJ tube. And as I mentioned before the head doctor of this unit (who personally...

Last year when I was put on a NG tube (again before I was diagnosed with gastroparesis and subsequently given a NJ tube), I looked at the French Society of Clinical Nutrition and Metabolism’s algorithm for weight loss and severe malnourishment, which included paths towards enteral and parenteral...

Sickening.

Every time I go to the hospital, whether it be in the clinical nutrition or the gastroenterology unit, I am weighed on a weigh-in chair. They don’t seem to be an uncommon medical device. There was this one stay at the hospital where nurses came to change my mattress from a regular one to an...

In my case, every time I go to the clinical nutrition unit at the hospital, they measure the following biomarkers: - Weight & BMI - Extensive bloodwork with a focus on electrolytes & minerals, vitamins and hormones (complete blood count, ionogram, liver, kidney, lipid & thyroid panels, etc) -...

Thanks, I sent them an email.

When I was put on a NG tube before I had a diagnosis of gastroparesis, I remember that I looked up the evidence on the 30/45 degree angle and despite digging deep, all I could find pertained to ICU patients who were unconscious. As far as I can recall there were no studies showing evidence of...

Of note, meals that are rich in carbohydrates (which are essential for energy) cause post-prandial tachycardia in some people with POTS: https://www.ahajournals.org/doi/10.1161/HYPERTENSIONAHA.121.17852

Thank you all for your advice. I am wary to engage with a physiotherapist but I know an “adapted physical activity” practician (this is an official / regulated discipline in France, nothing to do with chiropractics) who is very knowledgeable about long Covid and ME/CFS, so I will try to reach...

This is only my own observation but I can attest to this. I did have documented gastroparesis but it came out of left field when I had a big ME/CFS crash. That said, in hindsight, I was already struggling with my digestion after the peritonitis that made me very severe as I had tachycardia for...

I’ve been fully bedbound since September 2022 as a result of severe malnourishment from my gastroparesis. Two months ago I had surgery for it and since then I’ve been able to eat orally again, so I’ve been putting back on the weight that I’d lost and subsequently have more energy. I haven’t...

I feel deeply for them both. Though having endured not only Maeve’s death and the years of abysmal medical neglect by the NHS leading up to that but also the (publicly discussed) aftermath, I trust that they are resilient enough to withstand another attack by BPS advocates that they likely knew...

CBT has been trialed for fatigue in cancer (especially by Dutch BPS leaders including Knoop), MS (Moss-Morris et al) and RA, but at least for RA the results of the LIFT trial published two years ago clearly show that it is ineffective...

Yes, parenteral nutrition is always initiated at the hospital because the patient must be monitored for infections, electrolyte imbalance and refeeding syndrome, all of which can be fatal. When a suitable feed formula (which is custom made / tailored to the patient’s needs as I understand it) is...

A man in Germany is HIV-free after receiving stem cells that are not resistant to the virus. A 60-year-old man in Germany has become at least the seventh person with HIV to be announced free of the virus after receiving a stem-cell transplant1. But the man, who has been virus-free for close to...