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ME/CFS: An evidence based approach to diagnosis and management

Bob

Senior Member
Messages
16,455
Location
England (south coast)
The work of Dr Montoya and his team is showing that Valgancyclovir (Valcyte) is effective in a subset of us.

http://www.ncbi.nlm.nih.gov/pubmed/23080504

A 52% response rate is a dream response considering that many rheumatoid arthritis drugs do not reach a 30% response rate.

So why is this clinical trial not being replicated? Why is this not considered evidence based by the same country that published the so called evidence-based diagnosis and management?
This study did not have a control group and it was not blinded, so the results are meaningless except to give clues. The response rate does not have any relation to drugs used for other illnesses, because approved drugs for other illnesses will have been tested using rigorous trial methodologies. My memory is useless but I thought they had followed up this Valgancyclovir (or similar drug) research using a proper methodology (i.e. blinded and with a control group) and had very disappointing results. The next step was to try to identify a subgroup who might respond, because the overall response was not good enough. That's why it's not been approved as a treatment. But I am going from memory, so I'm happy to be corrected.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Re @SOC asking why ME/CFS patients are demanding evidence for high success rates before they will try a treatment, this isn't the impression I get. Many many patients have tried, and are trying, multiple treatments - often out of desperation, and often at great cost to themselves in both financial terms and health/energy terms, without demanding much evidence at all. Sometimes the treatments have helped. Sometimes they have helped at first, but then the effects have declined and/or disappeared. The same seems to occur with everything we try, at least in many people. It probably includes pacing.

I've remembered two aspects of my ME 'life' where pacing (I think) has made a very clear, long-term difference. In the mid-1990s I sometimes crumpled to the floor, devoid of strength and energy. That has not happened for a long time now, presumably thanks to pacing. In the mid-1990s-early 2000s I sometimes had to go upstairs on my hands and knees, and come down on my backside. That almost never happens now. In fact, in the last couple of years I have often been able to go up and down stairs and steps even without my walking stick. (OTOH using the stick when I need to can perhaps be included as a pacing aid.)

In the 1990s-2000s I thought that I might have to move into a bungalow, get a stairlift and/or start using a wheelchair and/or mobility scooter. These are no longer things that I am considering, apart from possibly a scooter for occasional use (if I could afford it).

I would call those definite improvements in functionality, and I put them down largely to pacing. I haven't taken any medication for my ME, other than supplements, and have been ill for 20 years.

I rarely get obvious or severe PEM now, other than mildish ones like temporary declines in sleep quantity/quality, polyuria, diarrhoea, tiredness, brain fog and weakness, but feel well quite a lot of the time - more than before, I think.

The main improvement that has eluded me is energy, although I do have spells of feeling quite energetic and being able to do quite a lot, sometimes for days in a row. Then several days of being tired and weak - but not ill.

Still not well enough to be able to do a full-time job outside the home, but I'm on the verge of being a state pensioner now!