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A n d   .  .  .

The plot

T h i c k e n s.
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https://www.facebook.com/lynn.shepler/posts/10152708388343231

THE CONNECTION BETWEEN FRAUD IN CFS AND LYME DISEASE RESEARCH, by Lynn Shepler, MD JD

(Feel free to share wherever you like, repost, or take ideas and rework into your own posts or blog.)

Sorry to tell you this folks, but I was a subject in this study — and the DATA IS CORRUPT. NO CONCLUSIONS about ME/CFIDS can be made from this study.

http://www.sciencecodex.com/scientists_discover_robust_evidence_that_chronic_fatigue_syndrome_is_a_biological_illness-151801

The conclusions they are trying to draw about CFS cannot be made because Dr. JM included unknown numbers of people with active TBD, who also had elevations in EBV titers. The rule for inclusion in the study was only elevated EBV titers. But we know that chronic TBD also causes elevation in cytokines, and also reactivation of a variety of herpes types viruses, including EBV.

In fact, Dr. JM would directly ask me during clinic visits if I thought I had “anything else” — but, hey, he’s the doc and an IDSA member. What was I to say? Yes, I DO THINK I HAVE “SOMETHING ELSE,” AND IT IS PROBABLY LYME AND BARTONELLA? I was there to see if the antivirals worked, and for me, they didn’t.

Then, in January 2014, I had an explosive Jarisch-Herxheimer reaction to two tablets of Bactrim — telling me that the night sweats and chills I had been experiencing for years were NOT due to any viral reactivation. Bactrim is a second-line agent for bartonellosis, an antibiotic I had not taken during any of the years post diagnosis of Lyme disease in 1996. In 2002, I had positive Bartonella serologies, but LLMDs would not treat me, although symptomatic and unable to return to work— better that I be disabled, than they pull out some Rifampin!

Even though I chased down every clinically-relevant article I could find on Bartonella and put them in a binder for them — spoon feeding them on the medical science — and Bart was then being reported into California ticks.

Then, finally, in April 2014, I had classic Bartonella rash over my left clavicle (yes, I took photos), as well as another huge rash over my chest (recurrent EM?), with > 20 lb weight loss due to severe loss of appetite/loss of thirst, muscle wasting, positive serologies by two different labs for Bartonella — all c/w Bartonella reactivation due to severe stress and immunosuppression associated with the severe JHR.

BUT , WITH THE RELAPSE, DR. JM REFUSED TO SEE ME even though I was an ACTIVE PATIENT in his infectious disease clinic. In medico-legal terms, this is called “patient abandonment.” He would only see me to give me antivirals! That was NOT a condition placed on any patient at the time of entry to Dr. JM’s clinic.

My case was inconvenient for Dr. JM for many reasons, but one of those reasons was that it demonstrated how contaminated the data of this study is.

During the telephone call that he finally placed to me virtually six months after I relapsed with TBD, and only after I sent threatening emails to his assistant — Dr. JM threatened ME, stating that if I reported his abandonment of me, and also told people the data was so contaminated — that I would be singlehandedly bringing down the entire infrastructure of ME/CFIDS research!! All my fault — as though he had NO ROLE in what he had done.

At that point, I lost respect for this person due to his moral cowardice and scientific dishonesty. What — I didn’t know what was going on here? Of course, I did.

The only conclusion from the study that can be made is that there is an ASSOCIATION between elevations in EBV and cytokines; it cannot be said to prove any biological basis for ME/CFIDS because that is presently a r/o diagnosis — one must r/o other conditions that may mimic ME/CFIDS, which Dr. JM did not do in the study population.

It is also well known that elevated pro-inflammatory cytokines occur in TBD — and, in fact, I had specimens taken in earlier years of my TBD disease demonstrating elevated pro-inflammatory cytokines.

Sadly, what’s new? ME/CFIDS and TBD patients screwed over just one more time.

TBD (Tick Borne Disease)

I told Dr. JM over the telephone that what Drs. AS and GW are doing is dishonest work, and that he cannot go to them, or their work for honest findings regarding these diseases. Dr. JM told me he is not working with Dr AS, but he did not deny working with Dr. GW.

This is scary, because it would be predicted that Dr. GW would want to unload all his symptomatic vaccine experimental subjects in the proposed Stage III Baxter Lyme disease vaccine trial onto “some other diagnosis” that does NOT REQUIRE ANTIBIOTIC TREATMENT.

Unloading what are TBD patients that would otherwise require expensive testing and antibiotic treatment during a vaccine trial makes Dr. GW’s and Baxter’s Lyme disease vaccine trial much, much simpler.

After all, how could you do a vaccine trial with SO MANY VARIABLES? People sick with possibly Babesia, Ehrlichia, Coxiella, Bartonella, and so forth — all theoretically difficult, if not impossible, to clinically tell the difference rom “Lyme disease” — but by falsely calling them all CFS, or fibromyalgia, or “something else,” or falsely claiming these patients are “nut cases”— he gets rid of these co-infection variables, and any diagnosis THAT WOULD REQUIRE ANTIBIOTIC THERAPY, AND EXPENSIVE LABORATORY TESTING TO BE PAID FOR BY BAXTER.

In a vaccine trial, Dr GW removes the expectation that he would have to chase these diagnoses down, and possibly provide antibiotics, or antimalarial agents — thus making the Baxter Lyme disease vaccine trial virtually unable to be done on any reasonable financial scale, not to mention how it would effect the ability to obtain meaningful statistical data to prove “efficacy” of the vaccine as required for FDA approval.

By throwing TBD patients overboard except for those with “objective evidence” of disease (that legally would require Baxter to address), Dr. GW takes out a huge swath of ill patients that he can dismiss as having “subjective symptoms” — and just falsely call these by definition (without even TESTING them) “fibromyalgia,” “chronic fatigue syndrome,” “ something else,” or “psychiatric illness” — any way he can off load these patients into some diagnosis not requiring the introduction of antibiotics that would hugely complicate a LD vaccine clinical trial.

The two LD vaccine trials published around 1999 by Glaxo SmithKline (GSK), and Connaught each recruited approximately 10,000 subjects. According to testimony by Karen Forschner of the Lyme Disease Foundation, GSK did not even do the LD serologies as required under the experimental protocol because they were too costly — so multiply the costs if they also had to screen for co-infections. The study morphs into a gargantuan undertaking that is likely to generate only statistical nonsense.

Thus, by throwing an entire category of TBD patients under the bus (those said to have merely “subjective symptoms”), Baxter would not be required to do a broad range of expensive laboratory testing to look for all these co-infections at the time of entry into the vaccine trial, or to provide antibiotics if a person reported feeling ill during the experimental trial (but did not have “objective evidence” — as though a patient must plead thei4 cause to a doctor as in a court of law!) — all of these variables would make the study design for an experimental Lyme disease vaccine a nightmare.

Only in the context of “objective evidence,” Dr. GW states in a recent article in the American J Medicine, should physicians look for these diseases.

Who ever heard of that as a criteria for diagnosis in medicine? Sounds like nothing but legalese, likely pasted in these medical journal articles by a consultant or Food & Drug Law attorney in order to get the LD vaccine trials past IRBs and through the FDA approval process.

Otherwise, any Lyme disease vaccine trial is sunk — too many variables, too costly. Will not fly. And you sure don’t want to introduce antibiotics to patients in a vaccine trial because it limits the ability to determine actual efficacy of the vaccine for Borrelia — but what is the study protocol for when a person gets Babs, Bart, Q fever, etc? Ignore, don’t test, don’t treat — EXCEPT IN THE CONTEXT OF OBJECTIVE EVIDENCE - so, only in a narrow set of patients, reducing cost and statistical complexity.

Dr. GW instructs practitioners to ignore these diagnoses — except in cases of “objective evidence,” but what Dr. GW is slyly doing is establishing the study design for the Baxter Lyme disease vaccine, killing two birds with one stone — because the standard of care for patients in the study, and those outside the study must be the same for legal reasons.

Looking at what is going on, I have wondered if Dr. JM is whoring for Dr GW, helping him unload TBD patients into the category of disease that does not call for the introduction of antibiotics, which would muck up Dr. GW’s work for Baxter. The guy has financial conflicts of interest with regards to private industry that twist the Lyme disease vaccine trial for Baxter like a New York pretzel.

The complexity of what Dr. GW is doing is lost on practitioners, who see him only as an academic infectious disease specialist providing “wisdom” — they don’t “get it” that Dr. GW works for Baxter, and that Dr. GW’s fractured proclamations appear to be done to serve the interests of Baxter, and any other vaccine manufacturer standing in line.

Connecting the dots takes a lot of thinking. In medicine, practitioners continue to trust that academic physicians who work for industry could not be severely compromised by their financial conflicts of interest. They consume the twisted medical literature on tick-borne disease without understanding how and why it is tainted.

The monstrosity of scientific dishonesty that we all endure is grotesque, imo. No conclusions about ME/CFIDS can be drawn from this study.

3
From Gail Kansky on Co-Cure

 National CFIDS Foundation funds Australian Researcher

 March 1,  2015
 
 The National CFIDS Foundation (NCF) is pleased to announce its  latest
 research grant recipient, Dr. Nikki Verrills, from the University of 
 Newcastle. 

 The $ 158,892 grant is titled "Investigating the in-vitro  efficacy of
 potential anti-CFIDS compounds in c-KIT+ myeloid  cells."
 
 Dr. Verrills is a Senior Lecturer with the School of Biomedical  Sciences
 and Pharmacy.  Her research interests center on understanding  the signalling
 pathways involved in cancer development, progression and  resistance to
 chemotherapy induced cell death.  Her research involves  cell biology and
 biochemistry, translation into clinically relevant mouse  models of
 disease, and analysis of primary patient samples.
 
 Alan  Cocchetto, NCF Medical Director, stated "Dr. Verrills is working in an
 area  of research that is of interest to the Foundation.  Since CFIDS
 patients  have an increased risk for the development of non-Hodgkins lymphoma,
 her  efforts could yield results that are directly applicable towards the 
 treatment of CFIDS.  We are very pleased to have her on our  team!"
 
 According to the NCF, Chronic Fatigue Syndrome (CFS) is also known  as
 Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) as well as  Myalgic
 Encephalomyelitis (ME).  Founded in 1997, the goals of the NCF  are to help
 fund medical research to find a cause and to expedite appropriate treatments
 for CFIDS/ME. 

Since its inception, the Foundation has  provided $ 2.5
 million dollars in self-directed research grants to global  scientists.  The NCF,
 an all volunteer 501(c)(3) federally approved  charity, is funded solely by
 individual contributions. 

Additional  information can be found on the Foundation's
 website at www.ncf-net.org or  in The National Forum quarterly newsletter. 

 The Foundation can be  reached at 781-449-3535.
 
 
4
    Scientists Discover Robust Evidence That Chronic Fatigue Syndrome Is a Biological Illness         Mailman School height=48       Mailman School


Video:    http://www.youtube.com/watch?v=skuFXVyUyRw

 Scientists at the Center for Infection and Immunity at Columbia's
 Mailman School of Public Health have identified changes in the immune
 system of people with chronic fatigue syndrome, known medically as
 myalgic encephalomyelitis. These findings are provide the most
 definitive evidence to date that the condition is biologically based,
 not psychological.
 
 The large, multicenter study, published on February 27 in the journal
 Science Advances, presents evidence of increased amounts of certain
 immune molecules called cytokines in patients who had the disease
 three years or less that were not present in those with the disease
 for longer periods or in those without the disease.
 
 In a video interview, lead researcher Mady Hornig, MD, associate
 professor of epidemiology, explains that the findings could help
 improve diagnosis and identify treatment options for the disabling
 disorder, which has symptoms that range from extreme fatigue and
 difficulty concentrating to headaches and muscle pain.
 
 Tangible substantiation of disease and the possibility of a blood test
 is a game-changer for people with the disease, says Hornig, who is
 also director of translational research at the Center for Infection
 and Immunity. 'This can bring individuals who have been denied a
 diagnosis, and denied recognition of their illness... to an early
 diagnosis that may in addition tell us something about what is causing
 their illness and how potentially to treat it.'
 
 
5
Quote
Everybody's worked/working it all out.
Satisfy the patient population.

Throw them a big study with big names.
Show them 'we take you seriously.'
Hell,know that the shrinks will pounce on it but leave it be to show that 'we're the ones defending you/trying to stand up for you.we're doing something see!! We're really helping you in spite of the attacks on us and you!'

Quote
Yeah right ! No thanks

Quote
Keep it biological. IOM it as much as possible.
Policy.Toe the line.Comb our hair neat,smart,n suit n tie it all up.
Well now, if they think they've dressed us all up they better know we have multiple layers underneath.

Quote
The true warriors here are the true patients. They're getting informed. They're getting help. They're moving on even.
The inconvenient truth is just too true.

Quote
This illness is caused by retroviruses.

Quote
We know it, we know it for sure.
All the hallmarks of.
All the footprints of.
Quote
Three years, or less, or more, that's the common denominator.
Quote
If nobody helps patients deal with it then patients will look to those who will help them.
It's only natural.

Quote
And the smart patients are getting smarter n smarter day by day.


Quote
Not all fatiguing viral infection triggers lead to ME before/at/after 3years. yes you ll find cytokines n chemokines common to all. but that s all. And not surprising.
Quote
but it isnt ME




Thank you very much for this, parisian.  Indeed, you've said it well !!!!!

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http://www.microcapobserver.com/chronic-fatigue-system-cfs-is-a-biological-disease-not-a-psychological-one-researchers-confirms/236651/

“Chronic Fatigue System (CFS) is a biological disease not a psychological one” – Researchers confirms

Posted on March 1, 2015  by    in  Health



It is evident from research conducted by scientists that chronic fatigue syndrome or CFS is the result of immunological dysfunction. This makes it clear that this is a biological disease, even though previously it was widely considered a psychological disorder.

A person with CFS or systematic exertion intolerance disease goes through a severe fatigue and a very hard time to concentrate on things since this illness comes with a package of headaches and muscle pain.

Mady Hornig, the lead author of the study, director of translational research at the Centre for Infection and Immunity, Columbia University has stated that “We now have evidence confirming what millions of people with this disease already know, that CFS is not psychological.’’

She further included “Our results should accelerate the process of establishing the diagnosis after individuals first fall ill as well as discovery of new treatment strategies focusing on these early blood markers.”

While conducting this study, the researchers came to indentify distinctive changes in immunity in patients who were diagnosed with CFS or ME which refers to myalgic encephalomyelitis, another medical term for chronic fatigue syndrome.

The researchers have applied immunoassay testing methods for determining the levels of 51 immune biomarkers in blood plasma samples. These samples were accumulated with the assistance of 2 multicentre studies representing a total of 298 myalgic encephalomyelitis or chronic fatigue syndrome patients and 348 healthy controls.

Researchers discovered unambiguous patterns in sufferers who suffered the illness for about 3 years or less than that and were not part of the healthy controls or suffers who has been experiencing this disease for more than 3 years or so.

It was identified that patients with a small duration had augmented amount of various kinds of immune molecules referred to as “cytokines”.

This connection was oddly strong with a particular cytokine known as interferon gamma which has been associated to the fatigue which is followed by numerous viral infections.

The study was published in the journal called Science Advances and according to the senior author W. Ian Lipkin from Columbia University’s Mailman School of Public Health “This study delivers what has eluded us for so long: unequivocal evidence of immunological dysfunction in ME/CFS and diagnostic biomarkers for disease.”

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http://res.dallasnews.com/interactives/nina-pham/


Free of Ebola but not fear

Nurse Nina Pham to file lawsuit against Presby parent, worries about continued health woes


By Jennifer Emily | Staff Writer
Photos by Smiley Pool | Staff Photographer
Published on Feb. 28, 2015


Experimental drugs and special care helped make
Nina Pham Ebola free. But today she fears she may never escape
the deadly disease.


The 26-year-old nurse says she has nightmares, body aches and insomnia as a result of contracting the disease from a patient she cared for last fall at Texas Health Presbyterian Hospital Dallas.

She says the hospital and its parent company, Texas Health Resources, failed her and her colleagues who cared for Thomas Eric Duncan, the first person in the United States diagnosed with Ebola.

“I wanted to believe that they would have my back and take care of me,
but they just haven’t risen to the occasion,” Pham told The Dallas
Morning News last week in an exclusive interview.


Pham says she will file a lawsuit Monday in Dallas County against Texas Health Resources alleging that while she became the American face of the fight against the disease, the hospital’s lack of training and proper equipment and violations of her privacy made her “a symbol of corporate neglect — a casualty of a hospital system’s failure to prepare for a known and impending medical crisis.”

She says that Texas Health Resources was negligent because it failed to develop policies and train its staff for treating Ebola patients. She says Texas Health Resources did not have proper protective gear for those who treated Duncan.

Texas Health Resources responded Friday with a statement from spokesman Wendell Watson.

“Nina Pham bravely served Texas Health Dallas during a most difficult time. We continue to support and wish the best for her, and we remain optimistic that constructive dialogue can resolve this matter.”

Watson declined to address the specifics of Pham’s allegations.

Pham wants unspecified damages for physical pain and mental anguish, medical expenses and loss of future earnings. But she said that she wants to “make hospitals and big corporations realize that nurses and health care workers, especially frontline people, are important. And we don’t want nurses to start turning into patients.”

In her 90-minute interview, Pham described working in chaotic surroundings at the hospital with ill-prepared nurses who received little guidance on how to treat Ebola and protect themselves. She talked about her life since her diagnosis and recovery, as well as her anxiety about the future.

Pham occasionally twisted a ring on her finger or slid a finger inside the cuff of her shirt and nervously tapped her wrist. She kept her composure except when she recalled the nurses who became “like family” to her when they cared for Duncan together and later risked their lives to treat her and Amber Vinson, another nurse at the hospital who contracted the disease from Duncan.


Nina Pham claims the extent of her Ebola training was a printout of guidelines her supervisor found on the web. “The only thing I knew about Ebola, I learned in nursing school” six years earlier, Pham said.


PATIENTS FIRST

"I was proud of us. We fought in the trenches together,
the frontline health care workers. That’s what nursing is about:
putting the patient first. We did what we had to do,” Pham said.


She remembers spending hours alone with Duncan cleaning up his bodily fluids, monitoring his vital signs and reassuring him that everything would be OK. Pham said Duncan was in a great deal of pain and frightened but always polite. He told her “he felt very isolated.” She held his hand and told him she would pray for him.

But when Duncan tested positive for Ebola, it sent panic and fear throughout Presbyterian — and the nation. Pham, too, was frightened.

“I was the last person besides Mr. Duncan to find out he was positive,” she said. “You’d think the primary nurse would be the first to know. … I broke down and cried, not because I thought I had it but just because it was a big ‘whoa, this is really happening’ moment.”

Duncan, who contracted the disease in his native Liberia, died Oct. 8. A few days later, Pham tested positive for the disease. She was initially treated at Presbyterian and then the National Institutes of Health in Maryland with a series of experimental drugs and plasma from Dr. Kent Brantly, an Ebola survivor.

She says that Texas Health Resources violated her privacy while she was a patient at Presbyterian by ignoring her request that “no information” be released about her. She said a doctor recorded her on video in her hospital room and released it to the public without her permission.

Charla Aldous, Pham’s attorney, put it more simply: Texas Health Resources “used Nina as a PR pawn.”

Pham said she considered not going back to care for Duncan after his diagnosis. Her colleagues said they wouldn’t blame her for not returning to her job where normal 12-hour shifts had stretched to 14 or 15. Even her mother said she didn't care if Pham lost her job.

Pham said that while she did not volunteer to care for Duncan, she felt that she couldn’t say no.

“I had a duty to take care of him,” she said. “It’s not in my nature to refuse.”


Thomas Eric Duncan died at Texas Health Presbyterian
Hospital on Oct. 8, 2014, 11 days after he was first admitted
with Ebola. Three days after Duncan’s death, Pham tested
positive for Ebola as well. (The Associated Press)


 
RELYING ON PRINTOUT


She said the extent of her Ebola training was a
printout of guidelines that her supervisor found
on the Web.


“The only thing I knew about Ebola, I learned in nursing school” six years earlier, she said.

Dr. Daniel Varga, chief clinical officer for Texas Health Resources, testified at a congressional hearing in October that the company shared an Ebola advisory it received from the Centers for Disease Control and Prevention before Duncan arrived with its personnel and said the Presbyterian staff was trained to manage Ebola.

“A lot is being said about what may or may not have occurred to cause Ms. Pham to contract Ebola. She is known as an extremely skilled nurse, and she was using full protective measures under the CDC protocols, so we don’t yet know precisely how or when she was infected,” Varga said in written testimony. “But it’s clear there was an exposure somewhere, sometime. We are poring over records and observations, and doing all we can to find the answers.”

Varga also acknowledged that the communication wasn’t enough and that Texas Health Resources needed “more proactive, intensive and focused training for the frontline responders” to Ebola. He also said the hospital followed CDC and state guidelines.

Aldous alleges that Varga misrepresented the information that the hospital system shared with its employees about Ebola and the type of protective gear Pham and others wore.

The day Duncan moved to ICU, Pham said, she and the charge nurse went in with double gloves taped to double gowns and wore double booties and a face shield. The hospital did not have hazmat-type suits, and Pham said her neck was always exposed.

“We’ve had nurses that I’ve worked with that worked in other states, and they worked in hazmat suits for flu and H1N1,” Pham said. “Why aren’t we wearing hazmat suits for Ebola?”

After days of asking, Pham said, the nurses were given hazmat suits. She said all the decisions to upgrade the protective gear and precautions were made by the nurses “on the fly.”

Meanwhile, the nurses devised their own hazardous waste area. In a room adjacent to Duncan’s, the nurses set up a place to take off their protective gear and shower after caring for him. In another nearby room, they placed bags of dirty linens, towels and other soiled items.

The nurses and respiratory therapists poured bleach into every bag, zip-tied them and placed them in cardboard containers. Pham estimated that the waste filled half a patient room.

No one would collect the waste or clean up, Pham said. At one point, the toilet the staff used stopped working and no one came to fix it.

“We were mopping floors with bleach and doing janitorial work and dealing with hazardous, lethal waste,” Pham said. “It was very physically and emotionally draining.”

Because of their long shifts, Pham took four days off. When she returned, she said, Duncan was “so very sick.”

By then, four nurses were assigned to Duncan each shift, Pham said: two inside his room and two outside. They traded places every two hours.

Pham was outside watching Duncan’s monitors when his heart rate plummeted.

“It was over in minutes,” Pham said. “It was very, very hard and devastating for all of us to have to go through all of that, to risk our lives and then we lose this patient.”

Texas Health Resources reached a settlement in November with Duncan’s family. The company apologized for not properly diagnosing Duncan with Ebola until he returned to the hospital for a second time. The company paid an undisclosed sum to Duncan’s parents and four children.



Pham says that when a test confirmed she had Ebola, she broke down crying. By her fifth day of isolation, she says she thought she was doing better, but a doctor wanted to discuss “end-of-life decisions” with her.

DEEMED ‘NO RISK’

The day after Duncan died, Pham said she met
with someone from the CDC and the
hospital’s employee health manager to walk
through her care of Duncan and how she
protected herself.


“They deemed me no risk,” she said.

She went home and later had a fever of “99-point- something,” about 2 degrees above her normal temperature. Pham said she called the hospital and the Dallas County health department, and was told to monitor her temperature. But unless her temperature reached 100.4, they told her, she should not be concerned.

She woke up early Oct. 10 with a temperature of 100.6. Pham said she called the Presbyterian emergency room and told them who she was and that she was coming to the hospital. She drove to the hospital, where she was put in isolation. Her boyfriend at the time was quarantined but remained Ebola-free. They stopped seeing each other soon after, and Pham is currently not dating anyone.

When she was admitted to Presbyterian, Pham said, she made it clear that she did not want any information released about her medical condition.

“I wanted to protect my privacy, and I asked several times ... to put be as ‘no info’ or at least change my name to Jane Doe,” Pham said. “I don’t think that ever happened.”

When a test confirmed that she did have Ebola, “I broke down crying” and was in disbelief.

“It was very scary,” she said. “My time at Presbyterian is a bit blurry just because I was in and out of having to take pain medications and just being very, very, very fatigued the whole time. One of the hardest things about having Ebola was the extreme amount of fatigue.”

Pham said she received three experimental drugs and “one glimmer of hope” when she found out that Brantly could give her plasma. Brantly, a doctor from Fort Worth, contracted Ebola in July while treating patients in Liberia. The plasma of Ebola survivors is helpful in the treatment of others fighting the disease.

Although Pham was always being watched and she talked with her family on the phone, she was lonely, she said.



Pham remains on the payroll at Texas Health Presbyterian but isn’t working. “I’m still trying to figure out
what I want to do next. It’s been such a life-changing experience, a traumatizing experience, too,” Pham said.


“Just knowing the whole world’s watching but you’re so isolated and the people that are coming [in to care for me] are risking their lives,” Pham said. “Touching me is life-threatening. It’s very lonely.”

By the fifth day of isolation, Pham was sitting up in a chair. She thought she was doing better. But a doctor came in to talk about “end-of-life decisions” with her.

The day Pham was transferred to NIH, a notation was made in her medical file that “she does not have the mental capability to make end-of-life decisions,” Aldous said. But PR people from Texas Health were trying to talk to her for a media release “about how much she loves Presbyterian,” Aldous said.

Texas Health, with a PR firm’s help, developed a slogan — “Presby Proud” — aimed at restoring the community’s faith in the beleaguered hospital.


Attorney Charla Aldous, who is representing Pham, says that
Texas Health Resources “used Pham as a PR pawn.”

Before Pham’s flight to Maryland on Oct. 16, she said, a doctor wearing a video camera under his protective hood came into her room and said he was filming her for educational purposes. Pham said she did not give permission for the video, which was released to the media.

“Thanks for getting well. Thanks for being part of the volunteer team to take care of our first patient,” a man’s voice said in the video. “It means a lot. This has been a huge effort by all of you guys.”

Pham, still lying in her Dallas hospital bed, got teary-eyed and said, “Come to Maryland, everybody.”

Pham said she understands the reasons for making the video.

“They had just a PR nightmare with what happened with Mr. Duncan … and then us being infected with Ebola. Not just one nurse, but two,” Pham said. “People lost faith in them, especially after we got sick.”

Pham said that she was asked on video — although not on the part released publicly — whether she wanted to stay or go. Pham recalled that she was scared and knew nothing about NIH. She said if she was getting better, she would stay. But if the staff, which was low because some were quarantined, could not handle it, she would go. By this time, Vinson was sick, too.
[/font]

“I could tell that they wanted me to
stay just because they kind of
knew, they could see I was
getting better,” Pham said. “They wanted that
‘yes, we cured her’ kind of attitude.
They wanted a win, especially after a loss.”

— Nina Pham



Pham sits in a park with her dog, Bentley. When Pham was diagnosed with Ebola after caring for Duncan, Bentley was also placed in isolation.


STRUGGLE TO RECOVERY

Before leaving NIH on Oct. 24, an Ebola-free Pham said,
“Throughout this ordeal, I have put my trust in God and
my medical team. I am on my way back to recovery,
even as I reflect on how many others have not been so fortunate.”


Pham said she was met with “radio silence” from Texas Health Resources when she returned home. No one called to ask how she was doing or offered to bring food.

The people who cleaned her apartment to rid it of Ebola tossed her sheets but not the duvet cover on her bed. The rugs were gone but not the thermometer that she used to determine her temperature was in the Ebola danger zone.

Now there is no such thing as a typical day for Pham. Though she still gets a regular paycheck from Presbyterian, which she joined in July 2010, she isn’t working. She spends time with her family and her now-famous Cavalier King Charles spaniel, Bentley.

There’s also the social aspect of life that is different than before. When she meets someone, she wonders if that person knows who she is.

“I feel like I’ve been less social, in a way. Every time you’re in a social setting, especially now, Ebola always comes up,” Pham said. “It’s very hard to talk about it.”

Before getting sick, Pham, a Texas Christian University alum, considered graduate school to further her nursing studies.

“I’m still trying to figure out what I want to do next. It’s been such a life-changing experience, a traumatizing experience, too,” said Pham. “I don’t feel like I’m physically but mostly mentally prepared to go back into the ICU for right now.”

Last week, she was supposed to fly back to the NIH to donate her plasma for research. But the icy weather delayed the trip, so she plans to reschedule.

Pham said she has a lot of anxiety about the possible long-term effects of Ebola and the experimental drugs.

She’s been told to look out for possible sensory changes, vision loss and organ failure.

Pham previously had complications with high levels of enzymes in her liver, and she’s concerned the problem has reappeared. She said that she can’t even have a glass of wine with dinner now without getting sick.

Some of her hair has started to fall out. A doctor at NIH told her that was caused by Ebola, she said.

“I don’t know if having children could be affected by this, but that’s something I worry about,” Pham said. “Just the uncertainty of it all. And if I do have a health problem in the future, is it related to Ebola or is it something else? How do we know that? ... That’s the scariest part — it’s the uncertainty.”

Follow Jennifer Emily on Twitter @dallascourts.




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8
Everybody's worked/working it all out.
Satisfy the patient population.

Throw them a big study with big names.
Show them 'we take you seriously.'
Hell,know that the shrinks will pounce on it but leave it be to show that 'we're the ones defending you/trying to stand up for you.we're doing something see!! We're really helping you in spite of the attacks on us and you!'

Yeah right ! No thanks

Keep it biological. IOM it as much as possible.
Policy.Toe the line.Comb our hair neat,smart,n suit n tie it all up.
Well now, if they think they've dressed us all up they better know we have multiple layers underneath.

The true warriors here are the true patients. They're getting informed. They're getting help. They're moving on even.
The inconvenient truth is just too true.

This illness is caused by retroviruses.

We know it, we know it for sure.
All the hallmarks of.
All the footprints of.
Three years, or less, or more, that's the common denominator.
If nobody helps patients deal with it then patients will look to those who will help them.
It's only natural.

And the smart patients are getting smarter n smarter day by day.


Not all fatiguing viral infection triggers lead to ME before/at/after 3years. yes you ll find cytokines n chemokines common to all. but that s all. And not surprising.

but it isnt ME



9
http://www.dailymail.co.uk/health/article-2972865/Proof-yuppie-flu-real-illness-Study-finds-chronic-fatigue-commonly-seen-professionals-not-just-mind.html

Proof at last that 'yuppie flu' is a real illness: Study finds chronic fatigue commonly seen among professionals is not just in the mind
  • Controversy has raged for nearly 30 years about chronic fatigue syndrome
  • The condition is also known as myalgic encephalomyelitis or ME
  • New study shows it does trigger a distinctive immune response in the body
By Fiona Macrae, Science Correspondent for the Daily Mail
 Published: 17:39 EST, 27 February 2015  |  Updated: 20:48 EST, 27 February 2015

The debilitating condition once derided as ‘yuppie flu’ is a genuine illness, researchers say.
Controversy has raged for nearly 30 years as to whether the symptoms of chronic fatigue syndrome are real or all in the mind.
Now a study shows the condition, also known as myalgic encephalomyelitis or ME, does trigger a distinctive immune response in the body.
The discovery paves the way for treatments that, given early enough, could prevent years of ill health.It should also help ease the stigma that has led to sufferers being dismissed as malingerers who imagine their symptoms.ME affects some 250,000 Britons and is more common in women than men. It was called ‘yuppie flu’ in the 1980s because sufferers tend to be aged between 20 and 40 and the illness was most frequently seen among professional people.


Video: http://www.dailymail.co.uk/health/article-2972865/Proof-yuppie-flu-real-illness-Study-finds-chronic-fatigue-commonly-seen-professionals-not-just-mind.html




However, the work is still preliminary and many questions remain to be answered, including why the chemical markers show up only in the blood of patients in the relatively early stages of ME.
Dr Hornig’s team is now looking for signs of the infection that triggered the immune response. Scientists have long thought a virus is to blame but have failed to find the culprit.
Dr Neil Abbot, of ME Research UK said: ‘A biological signature or thumbprint for ME is the holy grail – it’s what we all want to see. If the immune changes reported in the study can help, it would be a great step forward.’
The finding that the chemical signature is seen only in the first stages of ME shows the importance of early diagnosis and treatment, he added.
Sonya Chowdhury, of Action for ME, said the work ‘could have significant implications for quicker diagnosis and improved treatments’.
But some experts cautioned that the findings are preliminary and that ME research has been ‘bedevilled with false dawns’ for decades.Symptoms include extreme physical and mental fatigue and painful limbs. The condition can also affect memory, concentration and digestion, with some sufferers left so weak that they lose their job or become bed or wheelchair-bound. But with the cause unclear, scepticism has remained as to whether it is a physical illness or merely psychological.
10
http://www.dailymail.co.uk/health/article-2972865/Proof-yuppie-flu-real-illness-Study-finds-chronic-fatigue-commonly-seen-professionals-not-just-mind.html


FEARED FOR CAREER SAYS ROYAL HARPIST CLAIRE JONES HIT BY ME

By Rebecca English, Royal Correspondent for the Daily Mail

Fighting back: Harpist Claire Jones was bed-bound for three months
Just when she seemed to have the world at her feet – or at least her fingertips – musician Claire Jones was struck down with ME.
Two years after playing for Prince William and Kate at their wedding reception and months after topping the classical album charts, the harpist began to suffer ‘bone-sapping’ fatigue. She dismissed her symptoms as temporary exhaustion caused by her hectic schedule but in May 2013 developed excruciating pain throughout her body.
She also suffered migraines, dizziness and digestion problems. But doctors merely gave her painkillers and told her to rest. In desperation her husband, fellow musician Chris Marshall – whom she had married the previous year – took her to A&E, where Miss Jones suffered a seizure.
Fortunately she was seen by a sympathetic consultant who diagnosed ME. She returned to her family home in Wales to be nursed by her mother.
‘My tiredness and pain was so bad that I couldn’t even wash and was bed-bound for three months,’ the 30-year-old said yesterday. ‘It was like being a child again.’
She feared she may never play the harp again but after a regime that included changing her diet and taking up yoga, she is on the mend and has just released an album, Journey: Harp To Soothe The Soul, containing many of the songs that helped in her recovery.
The researchers, from Columbia University in New York, analysed hundreds of blood samples taken from ME patients and healthy people. The blood from those with ME showed a distinct ‘chemical signature’.
It had higher levels of various compounds released by the immune system to defend the body against infection. The link with an immune protein, interferon gamma, was particularly strong, the journal Science Advances reports.
Interferon gamma is blamed for the extreme tiredness that follows some viral infections and has also been linked to problems with memory.
The finding may help researchers develop the first diagnostic test for ME. It also raises hope of better treatments. Drugs that lower levels of some of the immune proteins already exist.
‘This study delivers what has eluded us for so long: unequivocal evidence of immunological dysfunction in ME and diagnostic biomarkers for disease,’ said researcher Dr Ian Lipkin.
Lead author Dr Mady Hornig said: ‘We now have evidence confirming what millions with this disease already know, that ME isn’t psychological.’


However, the work is still preliminary and many questions remain to be answered, including why the chemical markers show up only in the blood of patients in the relatively early stages of ME.
Dr Hornig’s team is now looking for signs of the infection that triggered the immune response. Scientists have long thought a virus is to blame but have failed to find the culprit.
Dr Neil Abbot, of ME Research UK said: ‘A biological signature or thumbprint for ME is the holy grail – it’s what we all want to see. If the immune changes reported in the study can help, it would be a great step forward.’
The finding that the chemical signature is seen only in the first stages of ME shows the importance of early diagnosis and treatment, he added.
Sonya Chowdhury, of Action for ME, said the work ‘could have significant implications for quicker diagnosis and improved treatments’.
But some experts cautioned that the findings are preliminary and that ME research has been ‘bedevilled with false dawns’ for decades.
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