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February 12, 2014

me+ME: About Suzy Chapman


Sections     
Introduction   

1. Final post on Dx Revision Watch

2. My appreciation


About ME/CFS


Introduction: 

This is not a crisis file: It is a file about Suzy Chapman, who was one of the main British advocates for persons with M.E., and who ran two extra-ordinary good sites, one on M.E. and one on the DSM-5 and the ICD-11.

And I speak in the past tense because she decided to stop working on the site that kept track of the developments of the DSM-5 and the ICD-11, and earlier also had decided to stop working on the site about M.E.

It's a great loss, as I will try to explain, but I can understand it quite well - or so I think - on the basis of my own experiences in M.E.-land, for these led me to  a similar decision:

I may write about M.E. again, in detail, and apart from the protocol I currently follow, about which there still are occasional posts, but only if it so happens that there is a major discovery about the cause for the disease I have for the 36th year now, and else I mostly will not write about it, and I will also hardly read about it - as indeed I've done nearly all the 35 years that I have been ill, since I am not a medical man, and I have many other interests, as shown by my site.

I do not know whether this holds for Suzy Chapman, but it holds for me, and indeed one difference between us is that I do have M.E. and do not have to care for anyone, while she does not have M.E. but cares for one who has it.

Also, the brief explanation and appreciation that follows is mine: she does not bear any responsibility for it.

1. Final post on Dx Revision Watch

Yesterday - February 11 - brought the following news (and I quote):

This will be the final post on Dx Revision Watch.

As from today, I am stepping back from advocacy work and from monitoring and reporting via this site.

Dx Revision Watch will remain online for the foreseeable future as a resource. Other than updating some existing posts, no new postings or reports will be added.

Before using this site or republishing content please read the Disclaimer Notes which are also posted below.

Suzy Chapman
Dx Revision Watch

I am a bit at loss as to what to say.

2. My appreciation

The reason I am a bit at loss is mainly that I am moved two opposing ways:

On the one hand, she is the only advocate for people with M.E. who had a real brain, which she combined with an excellent style and much hard work, and so this is a real and great loss for people with M.E.; on the other hand, I can very well understand her choice, given the great amount of anonymous idiots who are everywhere these days, and who are there merely because they have a computer and are anonymous, which very many believe allows them to say anything about anyone, which they do a great lot, and which seems to be the only thing the vast majority can do really well: speak evil of their betters.
[1]

To be sure: I am speaking for myself here, but I have been moved, in fact already in 2010, to shut up about M.E. on any site M.E.-patients frequent, and later to shut up writing about M.E. at all (nearly), namely after I had learned that my degrees (I am a psychologist and a philosopher, with degrees with only straight A's, all done while ill) and my intelligence are held against me, ordinarily, very much rather than that they are seen as an asset, indeed excepting the quite rare intelligent few.

Suzy Chapman has, for me, the distinction of being one of the very few who wrote about M.E. who did so very sensibly and very rationally, and she also is one of the very few writing about it who has a really fine mind.

I do not know what moved her to stop updating her sites, although I suspect the reason is more or less like I gave:

There are too few really intelligent persons who have M.E. or who care for people with M.E. to have any rational hope of achieving something important by one's own efforts, especially so since anything one may start soon attracts large amounts of meddlesome idiots - of which one generally doesn't know anything, except their aliases and such usually dumb and ill-written opinions as they give: Of nearly anyone I've "met" on Phoenix Rising I don't know the age, the real name, the degrees, or even the sex (aka gender), and they nearly all are very secretive about these fundamental data to judge a person minimally in a rational fashion, in great part - I suspect - because they have done little or nothing to boast of.

I do know that people with M.E. have lost one of their strongest and most rational and extremely well-informed advocates - but again I am moved in two ways, for
it seems also true that there is very little hope for patients with M.E. until the real cause of the disease has been identified, and Suzy Chapman has made two very fine sites, that will remain available, and will now be able to do other things.

So I think that in the end, she probably has done the wisest thing in the circumstances (as indeed I think I have [2]).

Note

[1] I am speaking for myself, and like to add that my appreciation of ordinary men has drastically fallen after having acquired fast internet in 2009, which is in considerable part due to my readings of many of the posts of the anonymous ordinary members with ME, but also to other things I learned, mostly about what other ordinary people who are anonymous are capable of writing.

[2] For I am feeling a lot better myself - apart from my disease - without having to explain 1+1=2 ten times to intellectual incompetents, and this also leaves me more time to do things I like and to maintain my site, which is mostly not about M.E. and never was.

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 Komarof

Ten discoveries about the biology of CFS(pdf)

2. Malcolm Hooper THE MENTAL HEALTH MOVEMENT:  
PERSECUTION OF PATIENTS?
3. Hillary Johnson

The Why  (currently not available)[2]

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
Magical Medicine (pdf)
9.
Maarten Maartensz
Resources about ME/CFS
(more resources, by many)


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