Category: ME/CFS

My sweet friend Anil van der Zee lives in Amsterdam–more accurately, he lives on his bed in an apartment somewhere in Amsterdam. Like too many, he’s had a lot of experience at self-isolating. Below is part of the blog he posted a few days ago. The Distant Corona Connection Adjusting.We are in a crisis! A…

It’s a frightening time for everyone. As we know, people with underlying medical conditions are at greater risk from coronavirus. At the same time, many of these individuals long ago adopted some of the strategies everyone is now being asked to adopt. Certainly people with ME–or with what is referred to as CFS, CFS/ME, or…

Like many or most, I don’t know what I’m supposed to be doing right now. I am “sheltering at home” in San Francisco, following the news, making way too many cups of coffee, chatting much more on the phone than usual, checking in with my 90-year-old mom in Manhattan, watching movies I’m not interested in…

I was supposed to be in Bristol, England, last week at the CFS/ME Research Collaborative conference. The conference went on as scheduled, but I decided the weekend before that the situation was getting too dicey to leave home. I didn’t want to get swept up in lockdowns and international travel blockades and not be able…

And here’s yet another study from Professor Trudie Chalder and colleagues at King’s College London, this time tackling fatigue in people with HIV—an often debilitating problem. The study—“A Biopsychosocial Approach to HIV Fatigue: A Cross-Sectional and Prospective Analysis to Identify Key Modifiable Factors”—was published online last month by the journal Behavioral Medicine. The causes of…

Leonard Jason, a professor of psychology at DePaul University in Chicago, is a recognized expert in research on the prevalence of and case definitions for the illness (or cluster of illnesses) variously referred to as myalgic encephalomyelitis, chronic fatigue syndrome, ME/CFS, CFS/ME and other names. I posted an interview with him on case definition a…

I have been trying to find out why Mahana Therapeutics, a San Francisco-based start-up, has chosen to disseminate misleading information about a web-based cognitive behavior therapy program for people with irritable bowel syndrome. Because Mahana’s co-founder and CEO, Rob Paull, has not responded to my letters, I have contacted some of those listed as science…

When I was in Australia two years ago–wow, can’t believe it’s been that long!–I spent some time with Dr Mark Guthridge, an associate professor of biomedical science at Deakin University in Melbourne. Several years ago, after a bout of mononucleosis/glandular fever, he developed myalgic encephalomyelitis, which in Australia even patients and specialist doctors generally call…

Last week, I wrote to Rob Paull, the co-founder and CEO of Mahana Therapeutics, regarding the company’s misleading claims about the web-based cognitive behavior therapy program for irritable bowel syndrome it recently licensed from King’s College London. I have also written to Professor Rona Moss-Morris, the co-lead investigator of ACTIB, the study that road-tested the…

Venture capitalist Robert Paull is listed on the Mahana Therapeutics website as the company’s co-founder and CEO. I have no idea how he got involved with this group of UK researchers and King’s College London. Given my own experiences, I would certainly have advised him against getting in bed with them, had he asked me–which…

I’ll soon post a blog on why I’m spending so much time on this IBS issue when I’m supposed to be focused on ME (or CFS, ME/CFS, CFS/ME, or whatever term is being used to refer to this illness or cluster of related illnesses). In the meantime, here’s a copy of the letter I sent…

Ten days ago, I sent a letter to Professor Rona Moss-Morris of King’s College London, seeking information about the licensing deal involving her web-based program of cognitive behavior therapy to treat irritable bowel syndrome. Since I have not heard back, this morning I made a second attempt to reach out to her and obtain some…