June 25, 2010


ME + me :  Updates on ME: Hillary Johnson + two impressive videos


    "The mild and the long-suffering may suffer forever in this world. As long as the patient will suffer, the cruel will kick."
     -- Sidney Smith
      "The only thing necessary for the triumph of evil is for good men to do nothing."
    -- Edmund Burke
    "A person may cause evil to others not only by his actions but by his inaction, and in either case he is justly accountable to them for the injury."
    -- John Stuart Mill, On Liberty

I am still not well at all and also still sad, but here are a a few more links that help clarify the recent XMRV news that also should show why ME is a very serious disease, also if you have a mild case of it, by the way, because then post-extersional malaise (aka PEM) may bring you down to severe ME, as is illustrated in the last of the following three links.

1. Hillary Johnson: Case of Chronic Denial

The above links to The New York Times of October 2010, not long after the article in Science on XMRV. It still is a very good expository article (in two parts, mind you, on the NYT-site as linked) by someone who knows a tremendous amount about the disease, about having the disease (Johnson herself has ME), and about the politicking around it, especially at the corrupt American CDC. The article is undramatic, factual, fair and completely justified, and gives a lot of key information in brief clear form.

Incidentally, Hillary Johnson also has Dutch translations of some of her most recent articles on her own site, about which I quote here a bit from "a massive fan" of hers, published yesterday on Phoenix Rising, by a woman who calls herself Muffin. (I changed the paragraphing and edited two typos.)

Osler's Web probably saved my marriage. My husband read the book when I was first terribly sick and could not read. HE read the book and was astounded, blown away and had a far better idea of what was so terribly wrong with his young, sick wife. That book made my husband understand what was going on with CFIDS and what the CDC did to us all.

Because of that book my husband understood why I was sleeping non-stop. It was not  depression or any other psychiatric illness, but CFIDS. Mind you I am lucky and have a good husband. But, Osler's Web did for me what I could not do for myself: explain all that was going on with me. The book also explained all the horrible things about CFIDS. After reading Osler's Web my husband went on to buy and read several books on viruses so that he had some idea of what was going on.

One day I will be healthy enough to thank Hillary Johnson personally for all that she has done for us. I don't know if the newly sick understand just what Osler's Web did for us. It is a fantastic history book on CFIDS and the CDC's horrible role. She got to the heart of the Incline Village situation, Dr. Peterson/Dr. Cheney's roles, and so on.

We all owe Hillary Johnson a HUGE thank you. Why am I going on about how wonderful Ms. Johnson is and what a brilliant, "stand the test of time" book she has written? Probably because we don't say it enough.

Use her website as a means to educate others: www.oslersweb.com (*). The book is stunning and should be bought, borrowed, stolen - however you can get your hands on it.

Quite so. (*)

Next, another excellent video about ME and what it means for patients, that I did not find but yesterday, though it has been on the internet for quite a while

2. YouTube - M.E. / Chronic Fatigue Syndrome - Sleepydust Video

This is very well done, though it is a bit slow for me, while some may consider it a bit dramatized. As to the imputation of dramatization: I have had and mostly have virtually all of the symptooms listed in the video, and suffered all the social and financial consequences sketched in it. In fact, this video understates rather than overstates its case, especially the case of those with serious to severe ME, for which see video 3 below.

And as to "a bit slow for me", and indeed not discovering this video earlier: I am a very fast reader, and generally I much prefer reading over listening, since I can read much faster than anyone can speak and since normally more attention was given to written text than to spoken text (hence on average it is better than spoken text). Also, having a very good visual memory without a delete button, I tend not to like the watching TV and pictures, because I prefer my own fantasies over those of others, and don't want others images take brainspace I'd rather reserve for my own.

As my third item, here is an excellent video by a patient with severe ME, that should make very clear what this disease may mean for patients, and indeed also why the prescription of especially Graduated Exercise Therapy for those with ME may be an attack on their lives: The very brave woman in this video got severe ME by mistakenly trying to push herself beyond the symptoms:

3. YouTube - Laurel's October 2009 CFS/CFSAC Testimony

As you will see, she can't even speak above a whisper since more than 10 years, for which reason someone else reads her text.

P.S. And that's were it stood on June 25, 2010, in the afternoon. There may be an addition or further Nederlog today, but there are no guarantees, and see the present P.P.S.

Here is one update: The NYT anounced some time ago it wanted its internet-readers to pay per view. Apparently, they started this today in the form of a block on this article (a few hours ago I accessed it) with a form you must fill in, thus:

Not an NYTimes.com member yet?

Enjoy Free Access

Just answer a few simple questions, select an ID and password, and you'll be all set.

It's free and it only takes a minute!

Listen NYT! It WAS free and NOW I must fear that my answers and my IP will be sold by you to spammers. Sorry: Won't do: See my Musings on computing and a new internet I want a free non-commercial internet, and I don't like to be lied to blatantly ("Enjoy Free Access" after you have filled in personal details is Orwell-Newspeak. If you do want really intelligent readers, you must treat them as if they are at least a bit intelligent, and if you dish out astroturf, as you do, you should make it a bit less dumb, or else dumb down the whole NYT.)

Also, Hillary Johnson links to the NYT from her site, without giving the text....

See my last link for my own position in this. (And I think I have to forget NYT, for I am just not playing this sucker game.)

P.P.S. It may be I have to stop Nederlog for a while. The reason is that I am physically not well at all, and it seems a heath-wave is coming, which is the type of weather I can't handle well. I don't know yet, but if there is no Nederlog, now you know the reason.

As to ME/CFS (that I prefer to call ME):

1. Anthony Komaroff

Ten discoveries about the biology of CFS (pdf)

3. Hillary Johnson

The Why

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf)
5. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

6. William Clifford The Ethics of Belief
7. Paul Lutus

Is Psychology a Science?

8. Malcolm Hooper Magical Medicine (pdf)
9. SleepyDust (patient) M.E. / Chronic Fatigue Syndrome (video)
10. Laurel (patient) Laurel's October 2009 CFS/CFSAC Testimony (video)

Short descriptions:

1. Ten reasons why ME/CFS is a real disease by a professor of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about maltreatment of ME.
3. Explanation of what's happening around ME by an investigative journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:
   "it is wrong always, everywhere, and for anyone, to believe anything upon
     insufficient evidence
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.
9. SleepyDust explains what life with ME/CFS is like for patients
10. Laurel explains what life with severe ME/CFS is like for patients

"Ah me! alas, pain, pain ever, forever!

No change, no pause, no hope! Yet I endure.
I ask the Earth, have not the mountains felt?
I ask yon Heaven, the all-beholding Sun,
Has it not seen? The Sea, in storm or calm,
Heaven's ever-changing Shadow, spread below,
Have its deaf waves not heard my agony?
Ah me! alas, pain, pain ever, forever!
     - (Shelley, "Prometheus Unbound") 

    "It was from this time that I developed my way of judging the Chinese by dividing them into two kinds: one humane and one not. "
     - (Jung Chang)

See also: ME -Documentation and ME - Resources

P.P.S. ME - Resources needs is a Work In Progress that hasn't progressed today.

(*) Presently - that is: at 25 June 2010 - www.oslersweb.com opens with a mistake (that makes the text displayed extend too far to the right, at least in Firefox and in Seamonkey - and I do not use MS IE), but the other pages display well, including her excellent lecture to the ME-conference in May 2009:

Maarten Maartensz

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