Comments on: Myalgic Encephalomyelitis: The shocking disease

By: Amelia

Amelia — Wed, 23 Feb 2011 01:07:38 +0000

Thank you for posting Jodi.
You are a voice for many … Including me.
Blessings to you :)

By: irene

irene — Sun, 20 Feb 2011 07:55:01 +0000

In tears I smile as you have stated so much of my daily years of existance, for us who suffer this dreadful hell daily to feel validated understood,this needs to be mandatory reading for all med. students knowing big Pharma would be so greatful,not!

Let us speak to the blind get it out there the dangers in our planet ,enviornment and useless drugs is all we are offered or labled the illness as ” mental illness ” drugs that bring in billions and poison us all, it is in posts such as this which took great energy and time I know, that people may open up to dangers in our careless treatment of our wonderful planet “Enviornment” where it all begins all illnesses how many need to die before they see,take rest and good care thank you Irene, Canada.

By: KonaRose

KonaRose — Tue, 07 Dec 2010 06:02:52 +0000

The heaps of abuse thrown upon those of us who are bedridden and living ‘death’ every day, is incredibly heinous. On the same day two weeks ago I was called names by two different ‘specialists,’ and they know I am a registered nurse. I barely speak to defend myself for I was too weak and in too much pain. So now I lay in bed, day after week after month after year, with only my husband to check on me, care for me, feed me. When death finally comes, believe me, it will be such a relief. I no longer want any more tests, no more ‘specialists’ to see, no more emergency room visits, see no more abnormal test results followed by name calling from doctors. Only people who are this very ill and abused by the medical system can understand this situation. I am fortunate to have my husband, my faith, and the hope of the resurrection. Thank you for being our voice, Jodi. You obviously have a few stronger days in order to speak so eloquently and dignified under such duress. Many blessings, my friend.

By: Montseniana

Montseniana — Tue, 20 Apr 2010 11:40:32 +0000

Hello! I have 31 years and am sick of ME since I was about 6-7 years.
I’ve never been able to do normal life, most days I was always sick at home than at school, always sick, my parents always thought I was a sickly child and they never suspected that I might have something more serious. Until I wanted to make my life and I could not. Then I started to go from doctor to doctor, psychiatrists, homeopaths, psychologists ……. all they told me the same thing: “you have depression and anxiety,” but I always knew there was something more, I knew that the problem was not in my head. One day, by chance, I will get to a page about me and information about the disease, and from there I started to look more infromacion, I visited a specialist and he confirmed my suspicions: I was sick of ME, I was sick since was very little, and that not only was sick of ME but of other diseases added like: MCS, fibromyalgia, and others.
Talking to the doctor who diagnosed me came to the conclusion that among the 6-7 years I began to develop symptoms of ME, at age 12 I had my first crisis of MCS as I remember, at the time did not know what happened to me, now I can say I know that was a crisis of MCS.
Now I’ve also discovered that when I was 5 years and a half I started to vaccinate against some allergies, I vaccinated up to 7 years, sorry but how not to relate these vaccines and my illness? is not necessary that vaccines are the cause, only that vaccines have contributed, the damage is already done ……..

Kisses & Hugs from Catalonia!!

Gènia.

By: Matthew Smith

Matthew Smith — Fri, 02 Apr 2010 19:03:13 +0000

Hi there, I got interested in the topic of ME after the Gilderdale trial here in the UK in January (I was vaguely aware of it before, but had no idea how severe it could be for so long, and that the abuses Jodi talks about are still ongoing). I do want to qualify something Jodi said about ME patients working with the groups she accuses of selling out. I've been in touch with a lady who is working with one of the better-known ME charities in the UK, the Association for Young People with ME (AYME). That group has been working to keep young ME sufferers in touch with each other and break the loneliness and isolation the illness causes. The group has a number of members with severe ME and recently issued a book on the subject, written by a lady called Emily Collingridge, who is herself bedridden (she had an extremely severe phase a few years ago). You can find details on the book here and an interview with the author here. The problem is that AYME (I suspect very recently) have moved towards the same position as Action for ME (one of those Jodi explicitly condemns) in advocating potentially harmful exercise therapies and CBT, which are right now officially sanctioned. This led to their medical advisor publically resigning, saying he wasn't being listened to and that the group was more interested in appearing "respectable". I wrote to this lady that AYME must be doing something right otherwise she and Emily Collingridge wouldn't touch them. She said that the work they do in keeping young ME sufferers in touch with each other was "invaluable" but that there had been "much exasperation and unrest among members" because of these issues. There is a group in the UK dedicated to helping severe ME sufferers (the 25% ME Group - the woman with the feeding tube on the masthead is Lynn Gilderdale) but I don't know if they have the same resources as AYME when it comes to teenaged and child sufferers. The Gilderdales were great supporters of that group but Lynn had been with AYME as well. There is another group, the Tymes Trust, which also helps young ME sufferers and their families and is supported by the leading ME investigators and experts like Byron Hyde and Elizabeth Dowsett. How that aspect of their work compares with AYME's I couldn't say.

By: earthwalker

earthwalker — Wed, 31 Mar 2010 19:00:27 +0000

Thank you again Jodi, for writing an essay that so many feel validated by. It’s amazing what you are able to accomplish in the face of such a devastating illness. You are so talented!

By: Rose Fenton

Rose Fenton — Tue, 30 Mar 2010 19:51:44 +0000

Thank you Jodi for all your articles, which I cannot always manage to read, being a severe sufferer of M.E. (almost all of my life!). It has been absolutely appalling, and still is, that the medical profession just generally does not accept how very ill we are, coping with so many symptoms on a daily, hourly, basis. After years of absolute denial, and being treated almost like a criminal for being ill, the only medical people who accept us are those who have it themselves, or a member of their family gone down with it.
I could write a lot more, but no room, except to say that I believe my illness started with a contaminated polio-vaccine as a school-girl, and I am now elderly, still disabled, with voice loss etc. etc. Thank you for all you are doing to make this dreadful illness known.
May you be given strength to carry on.
Kind regards, from Rose

By: MSM

MSM — Mon, 22 Mar 2010 14:47:57 +0000

Wow! That is one of the best articles on M.E. that I’ve read! I love that you cut through all the confusing BS and are getting the facts out there. This is something I’ll probably re-read many times, and will probably share with others. A very well done article. Good on you!

By: Jason Steinmann

Jason Steinmann — Sun, 21 Mar 2010 21:55:48 +0000

Thank you. My wife has been suffering a severe level of ME for about a year now and I’ve being trying to articulate what is going on to friends and family with little success. This helps a great deal. Good luck.

By: earthwalker

earthwalker — Sun, 21 Mar 2010 00:29:41 +0000

Thank you Jodi Bassett for being a strong voice of information amidst a sea of disinformation. Keep on shining your light so others can find their way!!