M.E.- Sites

 

    "One physician told her that if he could not understand her daughter’s lab results, they couldn’t be important.

Another said “he didn’t look at my daughter’s medical information because he didn’t want the facts to get in the way of his theory,” Mrs. Whittemore said in an e-mail message. “I could write a book on ridiculous things that doctors say to patients with C.F.S.” She added: “One day I just had enough. I said, ‘I’ve got to do something.’ ”"

-- New York Times, 11.12.2009


Experience  Definitions  Books  Sites  Problems  Medical info  M.E. in Amsterdam (mainly Dutch)


There is an ENORMOUS amount of information about ME on the internet - far more than anyone can profitably or sensibly read through.

If you want recent medical info that is up to date, sensible and by medical specialists, try Medical info and especially the 2003-report for the Canadian government (PDF-file).

Or else try some of the sites mentioned below - most of them have very many interesting and/or useful links.

The present December 2009 version is a rather different listing than was on my site until December 2009, for I have since learned about the medical fraudulence as regards ME that has been perpetrated by the US CDC, the English quacks Wessely and Sharpe, and the dangerous Dutch quacks Bleyenberg and Van der Meer - for which see Research Background below.



For me, who was ill for ten years - 1979 to 1989 - without even knowing the disease I had and also, apart from the woman I lived with the first 5 years of our shared disease, not knowing of anyone similarly afflicted, this is a huge improvement.

Others who have not been ill so long, and who take both their disease and rational argument serious, may well feel that there is far too much information about ME.

Through the last three years I have checked through quite a few sites about ME. Here are some of the best personal sites I found followed by a very good commercial one. First the personal or medical sites:

Most  useful

InvestInMe Fine English site, much info
Phoenix Forums Many patients
Phoenix Rising - Cort Johnson American patient
David Axford British ex-sailor and patient

Medical Background

Mette Andersen Danish MD and patient
CVS/ME Centrum Dutch medical center
DoctorMyhill.com English MD

Research Background

Malcom Hooper English scientist
InvestInMe Many papers by prof Hooper
InvestInMe: InfoCentreLibrary Fine collection of ME-material
Hillary Johnson American investigative journalist
Whittemore Peters Institute American Research Institute
New York Times article nov 2009 On ME, Whittmore and XMRV

Most of these sites contains a lot of information and very many links to other sites.

The advantage of most of the above sites (or parts of sites) are:

(1) they are informed and for the best part rational and scientific
(2) The first three are by people who know from their own experience what it is to have ME
(3) they are extensive and
(4) they are maintained or informed by academics.

The last point is relevant in that there still are academic health-professionals - especially in Great Britain - who claim ME is psychiatric, psycho-somatic, hysteric, neurasthenic etc. and have little other authority except their own health and academic diplomas. (Not everyone who believes he or she has M.E. indeed has it, but this is no reason to maintain that those who do have it are mentally disturbed - unless, of course, you are a fraudulent psychiatric or psychological quack out for easy money, or a sadist bent on destroying lives of ill people who cannot or dare not defend themselves.)

Here are some comments on each.

Most useful:

InvestInMe: This is a fine English site with much excellent material, including well-formatted versions of Professor Malcolm Hooper's fine writings about ME.

Phoenix Forums belongs to the above and consists of a number of forums for and by ME-patients, including quite a few who have it a long time.

This is quite helpful and many of these patients are well informed, sensible and write well. It also gives a lot of information about what various therapies and medicines did to various people.

Phoenix Rising is by an American with ME, Cort Johnson, and is well done with lots of information and help, also about the recently discovered XMRV-virus, for which there is strong evidence that it is somehow involved with ME.

For the XMR-virus see: XMRV Information Center.

David Axford's site contains many contributions by Dr. Ellen Goudsmit Ph.D., an English psychologist with ME and with a very great amount of scientific knowledge about M.E.

It seems to me that at present the combination of the Phoenix Forums and the InvestInMe  are the currently the best and most informative sites about ME: On the first you get the views and experiences of people with ME, in some cases for decades; on the second you'll find much well-edited information relating to ME written by experts.

The Phoenix Forums is a forum or set of forums that is set up by patients with ME many of whom are quite articulate, informed and highly educated, that also combines with the Phoenix Rising site that contains a lot of useful scientific information about ME. The Phoenix Forums and the Phoenix Rising site are located in the US.

InvestInMe is a large well-formatted site by English experts on ME, who are not of the harmful and dangerous English Wessely-school, and contains very much information about ME and its problems.

Medical Background:

Note on the following three items:

I very probably only partially agree with any of the medical doctors named and linked to, but the first has ME herself since many years; the second is my current medical specialist; and the third has a theory and approach that is like mine was for some 20 years.

Mette Andersen is a Danish M.D. with M.E. Yes, it can happen to real medical doctors as well. Her site has a lot of medical information around M.E.

It is no longer updated since the beginning of 2009.

CVS/MECentrum (in Amsterdam, Holland) is where I have been accepted as a patient in 2005. This is not as extensive or sophisticated a site as the others named and linked in the present file, but it has some information about carnitine and ME, also in English.

It is run by Dutch medical doctors, and seems the best place to go to provided you live in Holland and your G.P. believes you might have ME/CFS.

Note here that one basic problem Dutchmen with ME have is that the egregious medical and scientific dangerous professors frauds Bleyenberg and Van der Meer have done their utmost since 25 years to slander patients with ME and force them into psychotherapy - and meanwhile to prevent them from getting any other medical help patients are entitled to.

This is as honest and moral as denying AIDS is a disease and recommending its cure with beetroots and cucumbers; as decent and scientific as withholding people with cancer any medical help while insisting they must go for treatment to witchdoctors, psychiatrist or warranted medical frauds.

DoctorMyhill.com: This is the site of Sarah Myhill, an English G.P. with an extensive site, who claims to have treated 4000 patients with ME, and who has a theory about ME which is much like my own of 1987, and has an combined orthomolecular and medical approach that looks helpful.

Please note also that I do not recommend that you follow any medical therapy, especially not if you have little money and are ill, and that I strongly disrecommend that you follow any psychotherapy in connection with ME/CFS, if you have ME for more than two years.

My reason for my first recommendation is that the probability it will help patients with ME is small, as long as there is no good causal explanation of ME, while it is a certainty the medical people treating you will profit.

So here you have especially to consider your medical insurance.

My reason for my second recommendation can be taken from the text that follows for which also see my note (*) as regards my own qualifications to disqualify my brethren psychologists, most of whom I regard as frauds, even if they do not make their money fraudulently by way of ME, and especially if they are Dutch, like I am, unfortunately.

Research Background:

Both of the following are, in my opinion, excellent - but both will tend to incline especially patients with ME to depression, for it turns out that these people have been frauded on purpose for 30 years now by medical frauds working for the American CDC, and/or active in psychiatry or psychology in England and Holland, where patients with ME are abused, maltreated and defrauded so as to provide psychiatric/psychological "therapists" fraudulent incomes. (*)

Malcom Hooper is a retired professor of medical chemistry who wrote several very good reports on ME, that also deservedly attack the English medical frauds Wessely and Sharpe.

See his

for some very deserved attacks on the English medical frauds Wessely and Sharpe.

Hillary Johnson is an American investigative journalist, who writes for Rolling Stone and the New York Times  and who has brought to light the horrible fraudulence of the US CDC as regards ME

See her

for an excellent speech of May 2009 on an English ME-conference, and her site for the medical mega-fraudulence as regards ME perpetrated by the crimimal CDC, as proved by her in The Osler.

Whittemore Peterson Institute for Neuro-Immune Disease, a nonprofit in Reno, Nev., founded recently by the parents of a young woman who has the syndrome.

Here the evidence for the role of XMRV in ME was found in 2009.

New York Times article nov 2009: This is a good 2-part article in the NYT, that is a follow up on another article in the NYT from October 2009: Is a virus the cause of Fatigue Syndrome?

Strong Recommendation

It is my strong recommendation, especially if you are not qualified scientifically, to disbelieve and reject anything that is endorsed as regards ME by the American CDC, by the English medical frauds Wessely and Sharpe and their associates, and by the Dutch medical frauds Bleyenberg and Van der Meer.

All of these are fraudulent, false, phony medical quacks, who defraud their patients, abuse and falsify real science, and are only out for medical subsidies for themselves, and healthcare-insurance money for their fraudulent psychotherapies, if they are not sadists to start with.

My reasons for this strong recommendation are in the above links of Hooper and Johnson, that I myself only came to know in October 2009.


General advice:

Be skeptical and don't believe everything you read. Also, one very good thing about the internet is that you can do a search on topics. Thus you may find several perspectives on the same topic, which is usually helpful. This applies both in case you consider a medical treatment or consider buying supplements.

And if you only recently came to believe you have ME/CFS:

  • Try to find a good GP who can exclude or identify other possible causes for your ailments. This is important, for while you can live a long time with ME/CFS other diseases with similar symptoms may kill you fast if they are not properly diagnosed and treated. (So do not believe your persistent fatigue "must" be M.E. without going to at least one qualified M.D. If it is something else than M.E. this may be dangerous.)  
  • Try to inform yourself as good as you can. There is currently an enormous amount of information about ME/CFS on the internet. You can't read all, but you can currently find out about most approaches to and opinions about ME/CFS.
  • It also helps to cultivate a somewhat skeptical scientific approach, and it helps if you know some science.

Notes

(*) It so happens is that I have a top-degree (M.A.) in the (supposed) science of psychology, which I studied when having M.E. (apart from the first three months), and it so happens that my M.A. in it - a so-called free M.A., finished with the best possible marks - is mostly in physics, logic and mathematics, because I quickly learned that, by my standards, much of psychology is not scientific at all, but quasi-science, and that I had started it on the false premiss that it might help me understand human reasoning, which it didn't.

So... there indeed is truly excellent psychology, but much of it is in William James's "The Principles of Psychology", under the link, on my site, the knowledge of which indeed caused my starting the study of psychology, in the hope of more of the same quality, only to find out very quickly that much of modern psychology is fraudulent baloney, by my lights, which happen to be much informed by extensive knowledge of real science and philosophy of science. (For which see my Ten good modern philosophy texts and my site, especially the section Philosophy.)

My recommendation as regards psychology and psychologists, as a patient with M.E. since 32 years and as a psychologist is this: Beware, avoid, disbelieve - most psychologists are little better than frauds; very few know any real science; and clinical psychology is mostly a fraudulent mumbo-jumbo to enrich psychological and/or psychiatric conmen and -women, and all this wholly apart from ME.

Also, please note that I reached my own position on the fraudulence of most modern psychology-as-a-science around 1980, long before knowing about ME, and long before reaching my present conclusions, but simply on the strength of the awful "education" in psychology, and the very low intellectual quality of the professors teaching it, at the University of Amsterdam. (The link is to a series of essays published in the late eighties, in the course of a year, for psychologists and students of psychology at that university, in which I described my professors as "whores of reason". None of the frauds dared to contest with me in public.)

And yes, there still is real psychological science - but most of it is neurology, brain science, or mathematical statistics, all of which are real sciences that are not open to the vast majority of graduates in psychology, for they lack the required knowledge of science or mathematics, and usually have no real scientific or mathematical interests or talents whatsoever.


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last update: May 2, 2013