Posts Tagged 'early onset ME'

A letter to the king of Norway from young Norwegians with ME

Letter to King Harald of Norway from Martin and 58 other young people with M.E.

ME mum’s confessions proudly presents an important letter to King Harald from Martin (17). The letter is also signed by 58 other children and youngsters with M.E. (Norwegian original)

A shortened version of the letter was published in the leading Norwegian newspaper aftenposten.no and was also in the printed paper. In the paper, this was an important contribution to the ongoing debate on M.E. We recommend reading the full version. Both the letter and the following quotes make a strong impression.

Dear King Harald,

I write to You because You are our King and have shown that you care about the weak in our society. I also know that you are concerned about children’s and young peoples’s situation in Norway. I write primarily on behalf of my brother and me, but also for many other children and young people suffering from the disease M.E. or myalgic encephalopathy. Having lived with this disease most of my life, I increasingly ask myself the question:

Is Norway really the best country in the world to live in for everyone?
Living with M.E. is a terrible situation by itself, but that’s not why I’m writing to you. I write because especially children with M.E. and their parents today are terribly distrusted and misjudged …”

http://fryvil.com/2015/02/05/letter-to-the-king/

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Videos to watch, post to read….

We urge you to:

(1) watch these videos by Dr. Nigel Speight about ME in children

http://youtu.be/XcRZo1vO53c

http://youtu.be/XcRZo1vO53c

 

AND

(2) read this great post by Dr. Leonard Jason: http://blog.oup.com/2014/01/diseases-can-stigmatize-chronic-fatigue-syndrome/

“Diseases can stigmatize

By Leonard A. Jason

Names of diseases have never required scientific accuracy (e.g. malaria means bad air, lyme is a town, and ebola is a river). But some disease names are offensive, victim-blaming, and stigmatizing. Multiple sclerosis was once called hysterical paralysis when people believed that this disease was caused by stress linked with oedipal fixations. AIDS was initially called “Gay Men’s disease” when it was considered a disease only affecting white gay men. Fortunately, when these disease names were changed, those afflicted with Multiple Sclerosis and AIDS experienced less stigma. Inspired patient activists from around the world are currently engaged in another major effort to rename chronic fatigue syndrome (CFS). It is a political struggle to alleviate some of the stigma caused by the language of scientists at the CDC 25 years ago. ….”        (http://blog.oup.com/2014/01/diseases-can-stigmatize-chronic-fatigue-syndrome/)

Brace yourselves

The latest post at OccupyCFS (http://www.occupycfs.com/2014/01/06/behind-closed-doors/) is a must read.

Ms. Spotila has found some very important information about the NIH project on research definition for ME and it is Not Good News!

 

“There’s an important meeting happening at NIH today and tomorrow, but you probably know nothing about it. The secrecy of this meeting is intentional, and the implications of decisions made at the meeting are as far-reaching as the Institute of Medicine study. In fact, what I’ve learned about the meeting may strike you as worse than the IOM study process. ….

…. advocates must demand more information about the P2P Workshop, and must demand meaningful opportunities to participate. The planning and execution of the Workshop should be transparent if it is to have any legitimacy in the advocacy community. ….. – ask questions, provide input, and present a united front based on the truths we know about ME/CFS. We cannot wait until the end of the P2P process to make our voices heard, especially since this process will provide input into the IOM study.”

 

read the full post here: http://www.occupycfs.com/2014/01/06/behind-closed-doors/

Many thanks to Ms. Spotila for getting and sharing this information with us!

 

My Pity Party Because of ME

This was written earlier this year…..

Despite living with this horrible disease for years, ME still manages to find ways to thrust some harsh realizations on us.

Today’s realization has me indulging in a pity party. Complete with tears.
We had an appointment about a possible treatment* for one of my sons. The treatment comes with no guarantees but has a decent possibility of easing some of his worst symptoms.
Since that appointment my son has been too wiped out to discuss or consider the treatment. Because of ME, he has been too wiped out to think.

Today (three days later though even this was pushing it for him to think or discuss things) my son was finally able to tell me that because this treatment is 5 days a week (with about 2 hours travel each day – I would do the driving) for 4-6 weeks – he doesn’t think he can physically handle it.
I suggested we ask about trying it 3 days a week over a longer time period.

He can’t manage that either.

My son knows his physical and cognitive limits better than anyone else, and certainly I don’t want him to push him beyond them.

It feels cruel that this illness is so incapacitating that he can’t try a potential treatment.

A treatment that might help improve his cognitive function and lessen his pain. And yet ME has limited him so much that he can’t handle the intensive treatment schedule.

If my son were a patient with cancer and were too debilitated to try a treatment, people would more readily understand how limited he is.
Even though ME “… has been found to be more disabling than MS, heart disease, virtually all types of cancer, patients undergoing chemotherapy or hemodyalisis. It is comparable to end-stage AIDS, i.e. to how ill and disabled an AIDS patient is 2 weeks before death.” (Hooper and Marshall), most people don’t know it or believe it.

The level of debilitation with ME isn’t improved with something like a transfusion…. instead it just goes on and on with no improvement in function, no improvement in endurance and stamina.

Right now I need to process that my son is too sick for a possible treatment. I need to process that ME obliged him to say no to a potential treatment. I need to process this unwelcome reminder that most people don’t have a clue how disabling, debilitating and extraordinarily difficult live with ME is.

Hence my pity party with tears. (I manage to limit these to about 3 times a year.)

So I will shed tears today.

And then I will focus again on helping to make a difference for people affected by ME.

* To our knowledge this treatment has not been tried in people with ME and for that reason we do not feel comfortable being more specific about it. But rest assured. It is not GET and it is not CBT nor is it related to either one.