Search results

You might like a thread I started on BDV here: New Studies Show Borna Disease Virus Infection in Psychiatric Patients

I am not quite sure whether amantadine (which is a drug ME/CFS patients sometimes use) will work for BDV, as several studies found that this drug does not have antiviral effects for BDV, although this study says that amantadine does work for human isolates of BDV in vitro, but not laboratory...

The 1997 Japanese study mentioned above for example found BDV in 12% of ME/CFS patients using PCR, so that is evidence that BDV can infect humans. However, the article you translated above says: I am not sure if the contamination applies just to the work at RKI, or to BDV studies everywhere...

So you found by comparing your 23andme results to your whole genome sequencing result that there was only around a 2% error rate in 23andme; but in the Nature study, when they looked at important clinically actionable genes (such as the BRCA cancer risk genes) the error rate was 40%. Why do you...

I don't think the presence of BDV in humans is contested. Indeed, it was mentioned in the article that BDV was passed from transplanted organs coming from an infected donor. What possibly is new is that these 3 people died from acute BDV infections. There is a difference between a virus lying...

Borna disease virus (BDV), the bornavirus species which infects humans, has also been studied in the context of ME/CFS. Some studies found an association of BDV and ME/CFS: for example this Japanese study found BDV in 34% of ME/CFS patients. But Ian Lipkin's study found no association between...

I think Ampligen is presumed to work by increasing the immune response against pathogens. Since Ampligen stimulates TLR3 and thereby induces the interferon response (normally it is viral dsRNA inside cell that activates TLR3), Ampligen is acting like artificial viral dsRNA, stimulating the...

I agree, there will likely be some increase in walking in the more cerebrally-inclined patients, even if it's only a walk to the bookshop. But it is possible that increase may be less than you get with a person who is more physically active by nature. The sedentary vs physically active types...

I've often wondered how accurate a picture step monitors will provide of the activity level of a patient. If you are someone who prefers more sedentary activities anyway — like reading, writing, painting, working at a computer or tablet, etc — you might become very active in these activities as...

In terms of trying to run better clinical trials for ME/CFS, I wonder if it would help to select a cohort whose level of ME/CFS severity has been pretty stable over say the previous 3 to 5 years. This might tend to prevent these wild random fluctuations in status during the trial. So in...

Perhaps I am just an idealist, but I think we should feel responsible for doing these trials in the UK because of the nature of our medical system: the NHS will not offer treatments until there is a high level of evidence of efficacy, and the GMC will not allow UK doctors to use treatments from...

The other issue in the UK is clinical freedom, which seems more limited here compared to the US. In Dr Martin Lerner's blinded, randomized placebo-controlled trial treating 27 EBV ME/CFS patients with Valtrex, this culminated with improvements over placebo at 6 months. But when Dr Sarah...

This thread was spilt from : https://www.s4me.info/threads/cbt-jen-brea-twitter.3013/ I am not proposing we make GPs believe anything without evidence to support it. What I would like to see is the UK taking some initiative, by looking at the various treatments used by US doctors, and for...

Isn't one of the reasons GPs have readily adopted the (erroneous) psychogenic view of ME/CFS, and its associated ineffectual treatment with CBT/GET, is because doctors don't like to feel powerless when confronted by a patient with an illness; so by embracing these psychological views and...

It is a bit leftfield, so I think it's hard to make any judgements about its chances of success. But we can certainly keep our fingers crossed. What I did find interesting is Gerard Pereira's thinking about the nature of ME/CFS, as explained in Cort's part I blog: Pereira is basically...

I think you will find that ME/CFS patients do have low cortisol, if you review the studies: Studies finding lower cortisol in ME/CFS throughout the 24 hour cycle: one, two, three, four, five, six. Studies finding higher cortisol in ME/CFS throughout the 24 hour cycle: one. Studies finding...

Don't forget that Simon Wessely was appointed to the board of Trustees of the SMC.

The study I linked to found enterovirus infection was linked to tic disorders; so there is no proven direct link between enterovirus and OCD / perfectionism. I am just speculating that there might be a link. There is a link between OCD and Streptococcus infection in children.

Enteroviruses, one of the main viruses linked to ME/CFS, have recently been associated with tic disorders, and tic disorders themselves often come with comorbid obsessive compulsive disorder (OCD) or ADHD symptoms. Since perfectionism can be considered on the spectrum of OCD, this opens to the...

I don't know the exact circumstances, and I think timing of events is important in allocating cause: if these patients were stable for many years in their ME/CFS, and then right after the infusions became severely worse, that would suggest a causal relationship.