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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Johnny Nowhere’s “A Sample Day In The World of Chronic Fatigue Syndrome”
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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Yes, this is actually being done!
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.
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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Here are a few examples in the letter that is in the link below:
– 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!
Thankyou Margaret Williams for another awesome piece of investigation!
“The Other Side Of The Stretcher” (c) 2016
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“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
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:
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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Why The NIH Pathways To Prevention Systematic Review For M.E. and CFS Is Negligent!
First I want to say, I became an Registered Nurse in 1985. So my point of view is not of a patient, it is as of an R.N.
When I decided to take a look at the Pathways to Prevention Systematic Review for M.E. I saw right away that it was clearly negligent and harmful to M.E. patients.
I then thought the medical people who have this illness need to start speaking up about the negligence we have witnessed the last 20+ years. What I wrote below is also part of the letters that I also have written Beth Collins Sharpe AHRQ, and Dr. Francis Collins.
The authors who were paid to write the NIH Pathways To Prevention (P2P) Systematic For M.E. obviously did not have M.E. expertise, because they wrote a negligent document recommending unsafe non…
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