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Recovery…..and Reaction

Posted by Cort Johnson

PLEASE REPOST PUBLICLY”

In a recent post, (marked “Please do not repost publicly”)  Jodi Bassett noted her ‘outrage’ at Mike’s story of his recovery and declared herself ‘absolutely disgusted’ by Mike’s attempt to spread it. After only the most superficial acquaintance with the treatment procedures she declared it ‘harmful’

We were rather astonished. We’d offered the story because we thought it might offer some hope. What could have made this maven of medical  correctness so angry? Apparently the suggestion that Mike had myalgic encephalomyelitis tipped her over the  edge. Although we referred to Mike’s condition as ME/CFS throughout the paper Mike’s belief that he had myalgic encephalomyelitis was too much and a rather incoherent e-mail (see below) resulted.

An ME Patient: Mike had an acute onset from which he never fully recovered. Years later following a stressful situation and several treatments he responded very badly to very rapidly fell apart. While this is not your typical ‘got the flu one day totally collapse the next’ scenario it is not uncommon either. I know of one very virulent ME advocate who experienced a moderate onset followed years later by a severe crash that left her disabled. Dr. Chia has publicly noted on several occasions that he believes that the infectious trigger for this illness often occurs long predates the severe phase of the illness begins.

Test Results. The question of onset is relatively trivial, however with few practitioners basing their treatment procedure or diagnosis or it. It was the test results that compelled Mike to refer to his disease as myalgic encephalomyelitis. High viral titers of mycoplasma, HHV-6, HHV-7 and EBV as well as remarkably high RNase L and elastase levels put Mike squarely into the Incline Village subset that the Whittemore-Peterson Institute is focusing on. Incline Village, of course, was the seminal outbreak in the Sierra community in the 1980s’s that put ME/CFS on the map – and that so many ME advocates have gladly claimed as their own.

Incline Village Subset. Dr. Peterson believes that this viral-ridden subset makes up approximately 20% of the ME/CFS population and has a unique neuro-immune disease. This subset does not respond to most of the remedies that other patients (CBT, hormones, over-the counter supplements) try. In order words is THE viral subset in ME/CFS – it’s not the CBT set, or Jodi Bassett’s psychological CFS subset, this is the viral subset in ME/CFS. This very likely, of course, makes it the myalgic encephalomyelitis subset as well.

Intriguingly Mike has been mostly cured by a doctor who believes that a coxsackie virus (enterovirus) is at the heart of this disorder – a common belief amongst some ME experts. Far from harming myalgic encelphalomyelitis patients Mike’s story could conceivably- and the jury, of course, is still out on this question – be illuminating a treatment pathway that is particularly effective with just this group.

But according to Jodi Bassett Mike’s symptom presentation plus oddly enough, his conception of his own disease made it clear to her that Mike was no ME patient. That’s right – in Jodi Bassett’s world what you think your disease is -actually plays a role in what kind of disease you have. In a strange and garbled statement she said

“I have never been of the opinion that the illness this person suffered with was M.E. The onset didn’t fit at all, nor the symptoms or pattern of
symptoms/relapses. There was also an inability to understand the basic facts
of M.E. as neurological and infectious etc., and that M.E. and ‘CFS’ were
not the same, and there was a lot of support for various very problematic
(very much non-M.E. and anti-M.E.)
‘CFS’ groups and individuals (and
‘theories’) and so on. Nothing fitted M.E. Even ‘blind freddie’ could see
that this was not a M.E. patient.

Since Mike didn’t properly understand what M.E. was he probably didn’t have it. His tendency to communicate with and support CFS patients suggested that he was one of them. Mike really crossed the line when he became well using a treatment that did not fit her conception of this disease and then had the audacity to tell people about it. ‘Absolutely appalled’ by the taint that he might have left in her M.E. only website she quickly deleted every mention of him from it.

Reserving Judgment – Meanwhile Mike was at work (with me) trying to figure out a way to test the efficacy of this treatment with other patients. His doctor, with an already busy schedule, agreed to accept several patients that we could follow and agreed with our efforts to monitor them rigorously outside of his practice. We also worked to engage prominent members of the ME/CFS community in our efforts. We made it clear that only a few patients at a time could be seen and we agreed to share the results as they came available. Despite Mike’s success and his obvious enthusiasm we were careful to reserve judgment on the effectiveness of this treatment until we more hard information was available.

But Jodi Bassett felt no need to reserve judgment. Before our ‘treatment trial’ began she pronounced that the treatment not only would not work but was actually ‘harmful’. Bitterly she stated was ‘absolutely appalled’ by Mike’s decision to provide his story to others.

People wonder why anyone would become a politician given the inability to avoid being demonized by some part of the political spectrum but the same problem clearly applies, unfortunately, to the ME/CFS world. One wonders why anyone would be willing to share their success given the reception they are likely to receive. Unless they have the right kind of story they’ll be dealt with by abuse, hate e-mail and an attempt to squash their story.

Ultimately this is dangerous for all of us. People with this disorder have been helped by many different therapies making it difficult to believe that any one treatment will work for everybody. Given the hostile environment it’s possible that when your particular cure comes around you may never hear about it. Why after all would someone risk the comfort of their newly regained health to the buzz-saw of medical correctness that Jodi Bassett and others have erected?

Jodi Bassett has once again displayed the kind of over-reaction that permeates certain parts of the ME/CFS community. Responses like hers tear people from participating in the open discourse that people with this disorder need so badly. They do not serve any of our interests.

So I must ask you who is appalling here? Who is outrageous? Mike Dessin – who wanted to convey news of his recovery and perhaps provide hope for others? Or Jodi Bassett who based on limited evidence and bizarre reasoning quickly attempted to squash that hope?

Jodi Bassetts “Please Do Not Repost Letter’ Is below

From Jodi Bassett,

Hello everyone,

Over the last week or two I’ve read many different responses from members of
the M.E. community to the latest ‘ME/CFS’ miracle ‘cure’ story. Responses
range from sadness and frustration, anger and outrage, and real worry for
the severe harm such material may very well cause M.E. patients (directly or
indirectly). I share all of these responses. I’m absolutely apppalled by
this.

http://phoenixrising.me/Story/MECFSRecovery.aspx
http://cfsknowledgecenter.ning.com/profile/MichaelDessin

I’m writing to you about this case due to the facts that this person had, in
the recent past, a minor link with the Hummingbirds’ Guide website.

(This person was knowledgeable about the various system of detoxification in
the body, and so a comment on this topic by this person was quoted on the
page about antioxidants and detoxification. This person also asked me to
please place a link up to their site to help them improve their desperate
financial situation, which I did as I believed (regardless of the actual
diagnosis) the situation was truly very desperate.)

While I did include this link and this quote as described above, I have
never been of the opinion that the illness this person suffered with was
M.E. The onset didn’t fit at all, nor the symptoms or pattern of
symptoms/relapses. There was also an inability to understand the basic facts
of M.E. as neurological and infectious etc., and that M.E. and ‘CFS’ were
not the same, and there was a lot of support for various very problematic
(very much non-M.E. and anti-M.E.) ‘CFS’ groups and individuals (and
‘theories’) and so on. Nothing fitted M.E. Even ‘blind freddie’ could see
that this was not a M.E. patient.

At the time I did not feel it my place to comment publicly in any way on the
correct diagnosis of a very ill and seemingly vulnerable private individual.
However, a few months ago when I first got wind of this new development (see
the links above), I deleted all mention of and links to anything to do with
this person from the site, in absolute disgust.

I have chosen not to go into much detail here, but if you require more
information, please email me.

Clearly the webpages and websites linked to above are not recommended by
HGME in any way. The HGME also has no link whatsoever with this individual
and does not in any way support any part of this unhelpful ‘ME/CFS’ case
study.

Wishing all of you better health, and less inappropriate and harmful
‘miracle cure’ stories!

Best wishes everyone,
Jodi Bassett

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