January 18, 2013

me+ME: Strange disappearances at X Rx Blog

1. me+ME: Strange disappearances at X Rx Blog
About ME/CFS


This is about what the title says, and merely a brief note that registers two strange disappearances.

Update Jan 19, 2013: It's back again. See endnote.

1. me+ME: Strange disappearances at X Rx Blog

I follow - like most, I suppose - various blogs, papers, sites and people on the internet on a more or less regular basis: I see what they have to say, and I may write about it in Nederlog.

One blog I follow on a more or less regular basis is Dr Jamie Deckoff-Jones's X Rx blog and indeed sometimes I write about what I found there. The last time I did so was late in December:

This explains why I do not get happier from reading PR-prose emanating from Dr Jamie or Dr Judy, and indeed why it looks like PR-prose to me. It got read quite a lot. My text was Dr Jamie's and Dr Judy's own X Rx blog dated December 29 2012:

Today it disappeared - text, comments: all gone, without a trace, and also without the merest hint of an explanation.

What also disappeared today was Dr Jamie's blog that came after the last one linked above, and which appeared in January 2013.

I did not write about it, though I found it quite strange that Dr Jamie, who experimented with anti-retrovirals because she has ME/CFS and believed Dr Judy on the subject of ME/CFS and XMRV, said that she had no data about her experiments because... these data were on the notebook(s) that Dr Judy claims the Whittemores have made disappear, and the Whittemores claim that Dr Judy had made disappear.

What I found and find quite strange is not that Dr Jamie may not want to discuss her own health and her own experiments in public, but that she claimed that she cannot do so, because she has no data.

That is quite strange in itself: She received and made no copies for herself, who is a medical doctor, who had set out on a doubtful, dangerous and hardly ever investigated treatment for ME/CFS?!?!

That sounds plain crazy to me: You are a medical doctor; you and your daughter are engaging in a serious medical experiment; and you don't have copies of your own data and those of your daughter?!

Next, what makes it all the more strange is that she claimed these data are.... on one of those disappeared notebook(s) that is what started the Whittemores start proceedings against Dr Judy?! What a strange coincidence!

As to these notebooks: See e.g. these two Nederlog files from November 2011

First, about the "documents in the case", that may be quite relevant: At the time I wrote this in november 2011 I provided the four links that follow below, that in 2011 linked to files which were then available on the WPI website - whence they since are no longer available. But I have since then put them on my site - I really do not like to be duped! - and also linked that in Nederlog, but can't find where I did this, so here they are again, for those who want to know about those mysterious lab books - that were taken by Max Pfost on the day Dr Judy was fired, and that made the WPI start court proceedings against Dr Judy, and that Dr Jamie and Dr Judy claimed, in text that can be found in my Dr Jamie and Dr Judy mean very well..., contain all the secrets, including also the data about dr Jamie's experiment with ARVs, that she herself does not have, she claimed in another disappeared blog:

Reply To Opposition To Motion For Preliminary Injunction
Exhibit 1: Affidavit of Max Pfost -
Exhibit 2: Affidavit of Max Pfost -
Exhibit 3: Affidavit of Amanda McKenzie

In any case... the reason for this brief note is that today I found that at least two recent X Rx blogs by Dr Jamie Deckoff-Jones have mysteriously disappeared, without any trace and also without any explanation.

As I said, I don't want to be duped, flimflammed, flummoxed, lied to or played  by public relations professionals or their manner of prose.

I do not mind people retracting things, but if they do, and it is material that may be relevant to science or to court cases, I think they should say why they first published it and then retract it.

And there may be a later Nederlog today, on Diederik Stapel or on the DSM-5, but that depends on my health.


Endnote Jan 19 2013: This morning, unlike yesterday morning, the two posts on the X Rx blog that had disappeared are back again, with another one, that I wasn't sure about. I'll list them:

- Jan 10, 2013: Our experience with retrovirals
- Dec 29, 2012: "2013 will be a year of optimism, opportunity and hope"
- Dec 24, 2012: Back to basics

Well... that's better. I do not know whether they are the same, but they look like what I recall or quoted, and the comments that were there are there again. I even may write about the ones I did not write about, but make no promises.

About ME/CFS (that I prefer to call M.E.: The "/CFS" is added to facilitate search machines) which is a disease I have since 1.1.1979:
1. Anthony Komaroff

Ten discoveries about the biology of CFS(pdf)

3. Hillary Johnson

The Why  (currently not available)

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf - version 2003)
5. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf - version 2011)
6. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

7. William Clifford The Ethics of Belief
8. Malcolm Hooper Magical Medicine (pdf)
Maarten Maartensz
Resources about ME/CFS
(more resources, by many)

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