Nederlog

 

December 6, 2010

 

ME + me: Some good info about ME and some good ME-sites


I continue being not well, and otherwise also as before, so I cannot do much.

In fact, I will today only give a list of links of some sites I found useful for people with ME, with brief reasons why and preceded by three links to direct information about ME as a disease and about the pseudoscience that has been used to trivialize and falsify it into CFS:

1. Good overviews
2. Good sites

1. Good overviews:

The following three texts, of which the second is a fine overview of the first for medical laymen, are the best summaries of ME and its problems by qualified real scientists. They are very well worth reading, but not easy.

  • Canadian Consensus Government Report on ME (pdf)

    The Canada Criterions (as they are mostly known) for diagnosing ME from 2003,
    prepared by 14 medical specialists for the Canadian government. Note this is
    written mostly - unavoidably for such a report - in medicalese.

    These are the criterions for diagnosing someone as having ME that are taken most
    seriously by real patients with ME and real scientists researching ME. The alternatives are either less precise and useful (Fukuda Criterions) or consist almost whole of intentionally obscure psychiatrists' waffle (Oxford), that aims underhandedly to stigmatize patients with ME as insane if not malingerers, for which reasons patients with ME are excluded from all help, which saves the state and the health insurance companies enormous amounts of money.
     

  • Canadian Criterions Overview

    The same as the above, written by two members of the team, but a lot clearer for
    non-medical folks.

    This is probably the best exposition of what is scientifically known about ME/CFS
    in one file.
     
  • Magical Medicine (2010)

    This is by professor emeritus Malcolm Hooper, who taught medical chemistry. It is a very fine overview of what is know scientifically and of what is claimed and done non-scientifically as regards ME/CFS in Great-Brittain.

    This is another Must Read for anybody interested in the facts about and around ME,
    written up by someone with a great amount of relevant scientific knowledge.
     

2. Good sites:

I have checked that the sites that follow do exist today, and should add that I know of all of them since quite a while and have visited most of them many times.

The fact that I list them here as "good sites" does not imply that I agree with all that you may find on any of them, but only that they contain useful information for patients with ME and carers for such patients, outlined in at least a tolerably clear way, and indeed also that I have not found anything on these sites I strongly disagree with.

Finally, be aware that most of the sites in the list that follows are quite extensive, with many files, and that it may not be immediately evident from an opening page what is where or how the site is organized.

  • The website of Dr Sarah Myhill

    This is a website of an English MD who takes her patients serious, tries to treat them well and according to real science and not pseudoscientific psychobabble, and who therefore came into problems with the British GMC. See my The danger Dr. Myhill is in of April, and her own site above for more.

    There also is a great amount of useful information in various forms, notably her freely downloadable book about ME.
     
  • The 25% M.E. Group web site

    Around 25% of patients with ME get extremely ill from it, often for many years on end. This is known as severe ME, and this is a large site especially for patients with severe ME.

    It contains a lot of information and is well done.

  • Sophia and M.E.

    This is a site about Sophia Mirza, who had severe ME, was sectioned by force as a psychiatric patient, then released, after which she died. Her mother, Criona Wilson,  made the site, about which she says

         
    The object of this site is to show how and what was done
            to Sophia, so that maybe through this, others will become
            aware of the horrors perpetrated on her and on many others
            suffering from this terrible disease.

    It is very impressive, and very well done, if bitter to read, with many of the pertinent documents.

  • Dreams at stake - a journey of hope through severe ME/CFS

    This is the site of an American woman with severe ME since a long time, called Laurel. She writes well and has a clear mind, and also made an impressive video testimony.

  • ME Action UK

    This is the site of some British person(s) that has the merit of containing many of the papers, essays and texts by professor Malcolm Hooper and/or Margaret Williams.

    These texts are some of the scientifically and morally speaking most sensible writing and best informed writings I have seen on ME.

    A number of these can also be found, normally in better editions, on the following site:

  • Invest in ME

    This is a nicely designed and well done site with lots of material related to ME, notably by way of these two general links:

         -
    Information Centre Home  +  Information Centre Library

  • ME Agenda

    This is an extensive site by an English woman, Suzy Chapman, who is a carer and advocate for a young adult with ME.

    It is well done and contains large amounts of information relating to political, social and scientific backgrounds that are not so easily found or well presented elsewhere.

    Also, Ms. Chapman has a clear mind and can write well, while she has a strong concern with getting to the facts of the matters she is concerned with, and she further maintains the excellent site

    -
    DSM-5 and ICD-11 watch


    about the rather frightening coming DSM-5, in which - and I am by no means the only psychologist with this fear - all of psychiatry as endorsed by the American Psychiatric Association will have turned into pseudoscientific psychobabble, that will have been made effectively untestable in principle, but in the name of "evidence based science".

  • Osler's Web

    This is Hillary Johnson's site, related for the most part to her book "
    Osler's Web", about ME/CFS in the US, and how the US CDC mismanaged, prejudiced and deflected the proper medical and moral treatment of and scientific research into the disease.

    There is a section with recent pieces by her:
    -
    Updates

    and there is for Dutch readers a nice section
    -
    In het Netherlands
    which has the merit of containing really good translations of some fine texts by Hillary Johnson, but a mistaken title (as Dutchies will see, if they can spell, that is, which is not very likely these days).

  • CFS Central

    This the blog of an American journalist, Mindy Kitei, who writes well and who is informed about ME/CFS - and if you know anything much about modern journalism you know either is rare, and the combination very rare.
     

  • The niceguidelines blog

    This is the blog of an Australian medical doctor with ME. It is well done and well informed, and it is nice to have a real medical doctor writing about ME, for dr. Speedy, as he calls himself, does like real science and hates and despises psychobabble, as any respectable scientist should (see my Feynman vs Wessely).

    Dr. Speedy also has a nice taste in illustrations. Here is one of his (larger in the last link):



     

  • The Hummingbirds' Foundation for M.E. (HFME)

    This is an Australian site with a lot of information, that is well laid out and well presented, also with lots of scientific references.
     
  • CFS Patient Advocate

    This is the blog by a father whose daughter has ME since a long time:

         "The job of Patient Advocate came upon me uninvited. I did not
          apply for this job, nor did I have any qualifications for it. I am
          a sculptor, not a doctor or a researcher. My daughter became
          sick with a mysterious fatigue illness and I was the obvious person
          to fill the job."

    It is well done, with a lot of information.
     
  • Living With Chronic Fatigue Syndrome

    This is the blog of an Australian guy with ME and a sharp mind and some scientific competence and knowledge. It has some nice exchanges with pseudoscientists, and it is good to see a patient with ME who can and did quash the pseudoscientific fraud professor Wessely:
    Aussie quashes Wessely

So... this was a list of some sites and blogs I have come to know about the past year that I found helpful, instructive, useful, and/or interesting as regards as ME/CFS and the politicking and developments around and about it of various kinds.

None of these probably fully agrees with any of the others and I probably do not fully agree with any of them - but then there is no need for that if one sees someone makes sense, can write and can think. (*)

If you want to know more about ME/CFS I recommend you dip into the above list at various places, also because it helps to see the same subject through the eyes, minds or prose of various others, variously placed in life.


(*) I have to say this, because not so smart people, of whom there are many, tend to have less liberal and more totalitarian ideas and want "One Voice, One Community, One Cause" (their own, as in "Ein Volk, Ein Reich, Ein Führer": Frightening stuff, if you have the intelligence + knowledge to see it, is true. But OK... if the great majority feels that way, it must be right, mustn't it? 'DO follow the multitude, for Our Community's Good', isn't that what the Good Book says?)


P.S. Corrections must wait till later.

-- Dec 7, 2010: Some corrections of typos and bloopers.

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. 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)

2. Malcolm Hooper THE MENTAL HEALTH MOVEMENT:  
PERSECUTION OF PATIENTS?
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)

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.
 


    "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


Maarten Maartensz

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