Stanford's Dr. Jose Montoya on Chronic Fatigue Syndrome

This talk on the Chronic Fatigue Syndrome Team at Stanfords research, findings, & position on CFS was given a while ago now, back in March, but I've personally only just seen it, and am guessing there are others too who managed to miss it at the time it was first circulated on Youtube, so I wanted to share it here today.

It's so encouraging to see some real, positive research happening into CFS which doesn't begin with the premise that it is caused by psychological factors, and I found this fascinating viewing. Dr Montoya is very genuine and appears to sympathise very much with his patients, both for the physical hardships they are suffering, and also for the psychological harm they are undergoing because the majority of doctors (and the general public) dismiss our illness as 'not real', and the patients as 'malingerers' etc.

I particularly liked that he addressed the PACE trial so honestly, stating that it absolutely did not prove that CFS is psychological, or that psychological treatments can cure it.

Stanford have now set up a website where they will be posting relevant information on CFS as they progress in their research. You can view this site at http://chronicfatigue.stanford.edu/

This presentation is an hour and 15 mins long, but I highly recommend that you watch it if you're a CFS or ME patient or are simply interested in this area of research - it's worth the time!

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

Stanford's Dr. Jose Montoya on Chronic Fatigue Syndrome

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Media Report on The Lyndonville CFS Cluster : The Wall Street Journal

I noticed today that there is a new article, and video, by The Wall Street Journal reporting on the Lyndonville New York cluster of CFS - one of around a dozen such clusters around the World. It's the best press I've seen in quite a while, and it was such a nice change from all the bad press that the PACE trial has given us, that I decided to post it here. :) I wish it would get picked up by the UK news channels, but I imagine I'll be disappointed there!!

The article, written by Amy Docker Marcus, is titled The Puzzle of Chronic Fatigue Syndrome and reports on Dr Bell's (the GP for the area) efforts to research the possible role XMRV may have played in the cluster in his town. He has been treating people affected by the outbreak since the mid 1980's, and this seems to be the closest they've come to finding out what happened to cause such a cluster. Many of his original patients are still very ill, in a lot of pain, & often severely disabled decades after their initial symptoms began.

Dr Bell has had many of his patients from Lyndonville tested for XMRV, a recently discovered retrovirus which could possibly be part of the cause of Myalgic Encephalomyelitis (ME) / CFS, and has found that a high percentage of those tested are indeed infected with the retrovirus. I can only imagine both the hope and fear this has caused amongst his patients. Hope that finally something will be done, that a treatment may be found, or even just a single, validated test for the illness. Fear that this new retrovirus research will be repressed, like other such projects have been in the past.

You know, it strikes me as insane that a disease known for occurring in these types of clusters would be painted as psychological. In what universe does that even make sense?? Essentially what the psycho-social rabble are saying is that these clusters are caused by some kind of mass hysteria. What a load of rubbish!! There are hundreds of people in some of these clusters - it's completely realistic that every single one of them is putting it on, or is in some way mentally ill. So many clusters, across the whole world, many of them beginning at around the same time - that's something that immediately and obviously says there's a good possibility of the cause being an 'infectious agent' - viral or environmental, to any right minded person. It's a tragedy that the issue has been either ignored or maligned by doctors, researchers, and the media ever since the 80's!

Here's a copy of the WSJ Video report. :)

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

Media Report on The Lyndonville CFS Cluster : The Wall Street Journal

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How should we deal with this latest psychiatrist & media attack on M.E. patients??

So, the new Pace trial results were released online in the Lancet tonight. Yet another UK trial carried out by psychiatrists, with a patient population made up of people with the umbrella diagnosis of 'CFS', and, I might add, not including any patients who are severely ill - which predictably concluded that Cognitive Behavioural Therapy & Graded Exercise Therapy are the best treatments for ME - and in fact can even result in a complete recovery!

The study was based on the premise that in ME, the persistance of symptoms is caused by 'wrong illness beliefs' (ie believing you're ill when you're not), causing a fear and avoidance of activity, resulting in a deconditoning of the body due to lack of activity. (A premise which is not only completely ignorant of reality, but also deeply insulting!) You may at this point wish to note expert Dr Paul Cheney's deep concerns about graded exercise therapy, and Professor Hoopers Response to the PACE trial.

Honestly, my first reaction to these results was along the lines of 'same old, same old'. I mean, it's basically the same stuff psychiatrists, the government, and the benefits system in the UK have been harping on about for years now. I can't say it doesn't affect me, but you try to grow immune, you know?

Then came the storm of media articles, links popping up everywhere on twitter, and boy did my temper become engaged!!! I swear, my blood pressure must have doubled within seconds - all I think rushing immediately to my head, and perhaps beginning to boil while it was at it. I was fuming!




According to the hair-raisingly insulting title of The Independent's article, we should all just get out and exercise, and we'll be fine. Oh, and our illness is marked by "poor memory and concentration, disturbed sleep, aches and pains and disabling fatigue" - Oh yes, that perfectly sums up this life-destroying illness, doesn't it!!

The BBC's article was little better. Here they summed it up as 'Brain and body training treats ME'. Here our symptoms are described as mere 'tiredness, poor concentration and memory, muscle and joint pain and disturbed sleep'. If only!!!

The New York Times, thankfully, had a slightly more cynical & realistic view of the trial. (though this will make little difference for us here in the UK, it is nice to see!) It was a fairly balanced article, clearly showing the short-comings of the trial.


....................

It took me quite some time to calm down after reading these articles. I don't often get quite so affected by these kinds of things, but for some reason it really caught me off guard tonight. I was actually on the verge of crying, I was so angry.

I think ... I think I'm just so tired of all this. The politics of this disease are as exhausting as the illness itself - and there's something really very wrong with that picture! We shouldn't have to fight for the right to be respected, to be valued as members of the community, and to have biomedical research funded into our illness.

What really upsets me about media like this is the influence it has on how the general public see M.E., including of course our friends and family. There's already enough of a problem with misconceptions and wrong & unfair judgements on us. It's heartbreaking to think of all the people out there who are so desperate for support and understanding from their loved ones, and instead receive impatience, lack of understanding, rejection, and even downright cruelty. I've been on the receiving end of that myself a hundred too many times.

So what to do now? Well, the only real option, given that I'm not well enough to do much to actively fight this situation, is to put my feelings away in a box and try to move on, move past, and not live in this bitterness. Try to breathe again. How else are we meant to be able to deal with this crap?

Warning : Compressed Anger!!!!

How are you guys feeling about this situation ... and how do you deal with those feelings in this seemingly never-ending bombardment of disappointment?

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

How should we deal with this latest psychiatrist & media attack on M.E. patients??

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