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MALAISE IS INCORRECT, DONT SAY IT!

Victorian Lady

~Photo Compliments Of Google Images~

Hello M.E friends, people, astroturfs,  etc..

Every so often I do a blog post.
I’m not really a writer, the only time I do a blog post is when
I hope to point something out because of my knowledge of
being an active R.N. almost 10 years before I had to stop working
because of M.E 23 years ago!
From what I can see, people think I do not know what i’m talking about!
I did 3 other blogs on this subject and very few people paid attention.  I kept hearing my PEM, my PEM, the doctor doesn’t believe my PEM!

Friends, listen to me, everytime you say “Malaise,” as in “PEM”, you
validate Ed Shorter’s Victorian Woman description of this illness we suffer from.

Everytime you say Malaise”, as in “PEM”, you validate the Late Steve Straus NIH idiopathic fatigue illness!

Do you suffer from the Ed Shorter version or do you suffer from M.E?

What does the name Ed Shorter mean to you?

Do you suffer from the Steve Straus NIH idiopathic fatigue illness or do you suffer from M.E.?

What does the name Steve Straus mean to you?

Are you an  M.E. patient or are you a fool? 

Because that’s what CDC and NIH have made all of the M.E. patients look like!

See what I mean!!!

Am I making sense!

If you suffer from the Ed Shorter version then keep on saying my “PEM” is acting up!  

If you suffer from the Steve Straus idiopathic fatigue illness then keep on saying my “PEM” is acting up!

If you suffer from M.E. then by all means, do not use the word “Malaise” because
the symptom you suffer from, the crash, relapse of symptoms, exacerbation of
symptoms. muscular and neurological fatigabiity as noted in Ramsay’s Definition of M.E is not “Malaise”.

The word “Malaise” insults you as an M.E patient.
The word “Malaise” invalidates you as an M.E patient.

The word “Malaise” quite frankly makes you look like a fool compliments of the NIH and the CDC!

The word “Malaise” is not the symptom you suffer from!

I don’t have to prove this, any medical dictionary will tell you what the
word “Malaise” means and it has nothing to do with M.E.

What does the word malaise mean?

malaise

 (mă-lāz′, -lĕz′)

 

Now, is that your symptom you suffer after activity or exertion?

I didn’t think so!

I have written 3 blogs about the word “Malaise” starting in 2014, and very few people paid attention because they think Anne was “just a nurse” and “doesn’t know what the hell she is talking about.”

I have seen medical forums and blogs where medical people are laughing at
us (or I should say “Fibromyalgia” patients, they refer to us as “Fibromyalgia” patients and not M.E. patients because they are not taught M.E. in the medical schools  here in the United States) because of that word “Malaise”. 

Its terrible!

 I have even seen a new term going around the M.E. community on the social media called “Super Malaise” that probably came from an astroturf forum.

My friends, there is no such thing, word, or medical terminology as “Super Malaise” so don’t say that one either!

Quite frankly, when I hear that word “Malaise”, I get agita!

Agita is an Italian slang word for upset stomach;

Anyway,

My friends, if you want to get it right, the whole thing has to be right including
the name of the key symptom of the illness you suffer if you have M.E.!

Not the Ed Shorter Version
Not the late Steve Straus NIH version,

But A. Melvin Ramsay version!

I have a feeling I have wasted my time again and most will say,
Anne was just a nurse and doesn’t know what the hell she is talking about.

My friends, one day, if we see the end of this nightmare, and actually have a
correct illness criteria with a correct name, using correct medical terminology,
and treatment to make us functional to where we could actually work…..
if we are actually alive to see this….
you may just thank me and say
Anne, you were right, the whole package needs to be correct!

So until then, don’t say it. 

Because,

MALAISE IS INCORRECT!!!!!!!!

DON’T SAY IT!!!

 

 

“The Other Side Of The Stretcher” (c) 2017

This blog is not for medical advice.
For medical advice, you must speak with your physician!

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Credit is given for images and also information in this blog by either google images or the creator of the image or source of information.

If you don’t see credit and you see your image or information,

please leave a note in the comments so credit can be given.

If you are “offended” by my posts, click the “X” on the top right of the browser page!

Thankyou!

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“You’re young, healthy, thin – and nothing’s wrong with your heart”

Heart Sisters

Elissa and her family              Elissa and her family

Elissa is a busy 32-year old professional violinist, a mother of three, and a violin teacher who also teaches part-time at her local university. Last year, the northern Utah resident began experiencing unusual symptoms that seemed to be heart-related: chest pain, shortness of breath and crushing fatigue.

These symptoms were so alarming that she knew she needed to seek medical help. See if you can spot the red flag as she tells her story . . .

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Case report: Alison Hunter

ME Australia

By Christine Hunter

For the past decade patients diagnosed with chronic fatigue syndrome have been shamefully mistreated due to government policy failure and lack of medical education.

Case Report by Sukocheva et al.BMC Infectious Diseases (2016) 16:165, Coxiella burnetii dormancy in a fatal ten year multisystem dysfunctional illness: case report.

Routine autopsy findings in 1996 were limited. Assurance was given that formalin fixed paraffin embedded tissue blocks could be retained for 30 plus years for examination when ME/CFS biomedical research had progressed. Frozen tissues also retained were lost in freezer breakdown in 2000.  

At the 2005 ME/CFS meeting in Adelaide, paediatrician Dr Katherine Rowe reported that she always tested for Q fever if young people with CFS have had contact with farms. In 2009/10 it was requested due to frequent farm visits that the autopsy tissue blocks should be tested for Q fever.

Detailed neuropathology studies commenced in…

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A Sample Day In The World Of Chronic Fatigue Syndrome

Johnny Nowhere’s “A Sample Day In The World of Chronic Fatigue Syndrome”

Captain's Blog; Stardate: 2017

Successfully dragging myself from the bed at 6:58, I’d gotten dressed. As I sat there resting afterward, I found myself mulling over the discussion that I’d had with five new friends that I had discovered on Twitter the day before.

A lively exchange ensued, an we typed freely as if we’d known one another for years, and in a way – we had. We all suffer through the same relative hell. I can really connect with someone who speaks my language. No one else does.

“I need to get in there to try and start writing while my brain is fresh.” I told myself.

——————————————————

‘Fresh’ is a relative term these days. I knew that by 11:30 – which in normality, would’ve been my “wide awake and running on all eight cylinders” time – I would be approaching worthlessness. On a good day, I might even be able to stave…

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How To Make Sure An Invisible Disease Stays That Way

Yes, this is actually being done!

CFS Untied

Update to CFS – The Invisibled Disease – by Khaly Castle

Would you like a dose of outrage?  Try this.  30 years later, and we have proof.  Not proof that this illness is real.  Not proof that it is biological.  We know these things.  No, I’m talking about proof that the research community at large IS NOT INTERESTED IN RESEARCHING THIS ILLNESS.  NOT EVEN A LITTLE BIT.

Originally published and completely written by Erik Johnson on September 8, 2015, “CFS – The Invisibled Disease” recounted the history of how a syndrome was made to disappear before our very eyes.

https://cfsuntied.net/2015/09/08/cfs-the-invisibled-disease/

Erik’s article documents the events that culminated in the creation and subsequent undermining of the Chronic Fatigue Syndrome.  He says:


Two teachers from the Truckee teachers lounge happened to be in Peterson’s office when CDC epidemiologist Gary Holmes was there.  They asked to see him for something that was on…

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“Cooking The Books” and Margaret Williams 2016 Letter Re PACE Trial

cookthebooks

 

“Cooking The Books” and Margaret Williams 9/2016 letter “PROOF POSITIVE ? (REVISITED)” on the PACE Trial

 

Basically, Margaret Williams points out more details in how the PACE Team “Cooked The Books” and with their own money to boot!!!!

 

How stupid can one be- they are stupid crooks that’s why!

 

I noticed, everyone spends years on debating “scientific” data. If everyone would look at how the “books are being cooked”, we would solve these matters sooner!

 

In other words- STOP WASTING TIME WHILE PATIENTS SUFFER!

 

Stop being “politically correct” and worrying if your insulting some “supposed” “top” guy at a “supposed” research institution.

 

THEY WORK FOR US, WE DON’T WORK FOR THEM, THEY SHOULD BE QUESTIONED FROM THE GET-GO!

 

Here are a few examples in the letter that is in the link below:

 

 

“Facts to be considered:

 

1. Peter White has used his own money, as well charitable money and public money, in order to lobby support for his belief that ME/CFS is a psycho-behavioural disorder that can be overcome through “cognitive restructuring” and graded aerobic exercise

 

2. he has egregiously used large sums of public money (£250,000) to prevent the disclosure of data that would falsify his belief

 

3. for nearly 30 years, he has ignored evidence that disproves his belief, including evidence from his own trials

 

4. he has failed to correct errors of fact after being alerted to them

 

5. he has consistently failed to disclose significant financial, institutional and ideological conflicts of interest

 

6. he has been in breach of his NHS contractual obligations in that he has persistently ignored mandatory directives and has wilfully encouraged other clinicians to do the same

 

7. as a consequence of his actions:

 

-money which should have been used for biomedical research into the aetiology of ME/CFS has been diverted to fund studies into therapies which were already known to be ineffective and even harmful

 

– patients have been stigmatised as sociopaths and malingerers who refuse to accept they have a behavioural disorder,

– patients have been denied financial support from private insurers for whom Peter White and his colleagues work,

(for example, he was Chief Medical Officer for the giant re-insurer Swiss Re and was also CMO to Scottish Provident),

-and from the Department for Work and Pensions (where he was lead advisor on “CFS/ME”

-and was a prominent member of the group who re-wrote the chapter on “CFS/ME” in the DWP’s Disability Handbook used by Examining Medical Practitioners,

-by DWP decision-makers and by members of the Appeals Services Tribunals);

-he also works for the US Centres for Disease Control, and for defendants in legal actions (BMC Health Services Research 2003:3:25)

– patients with ME/CFS have been wrongfully sectioned and detained under the Mental Health Act

– clinicians who oppose his views about ME/CFS have been sanctioned by the General Medical Council and prevented from working.”

 

 

 

 

Unfortunately we have gangsters in our field, and there are more, all you have to do is look around and pay attention!

 

Crooks, gangsters, medical researchers included, etc.. always leave a paper trail and most of it is online now.

 

 

Before you donate your money to research, do your own research to see where the money is going!

 

 

Hopefully more people start paying attention to these details!

 

 

 

Thankyou Margaret Williams for another awesome piece of investigation!

http://www.margaretwilliams.me/2016…Margaret Williams 2016 Letter

 

 

R. (2003). Cook The Books. Retrieved September 22, 2016, from http://www.investopedia.com/terms/c/cookthebooks.asp 

 

“The Other Side Of The Stretcher” (c) 2016

This blog is not for medical advice.
For medical advice, you must speak with your physician!

Trolls

Plagiarizers

Credit is given for images and also information in this blog by either google images or the creator of the image or source of information.

If you don’t see credit and you see your image or information,

please leave a note in the comments so credit can be given.

If you are “offended” by my posts, click the “X” on the top right of the browser page!

Thankyou!


The #CoyneEffect: Is the ME Community Stepping Up or Backing Down?

Thankyou Jeannette!!!!

“Never be bullied into silence. Never allow yourself to be made a victim. Accept no one’s definition of your life, but define yourself.” – Tim Fields

Thoughts About M.E.

I have received a number of messages from members of the community inquiring about my absence from ME advocacy and about my health. I deeply appreciate the concerns and thoughtfulness. James David Chapman recently tweeted:

tweet_chapman

I posted a series of tweets in reply to James, which are reproduced below, because the tweets should be read in succession, as each builds on the prior ones. This, obviously, scratches only the surface of the effects on the community of Coyne’s rampage against ME advocates. But I am not well enough to write a blog post fleshing out the topics of my tweets.

I apologize for the incomplete list of those who have been targeted by Coyne, by public or private attacks or threats or by being aggressively blocked on social media. Louise Reed was one of the targets of Coyne’s vicious cyberbullying who is not mentioned below because I didn’t have enough…

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