Saturday, January 22, 2011

X-treme denial: Will they hear our whisper?

 
"honestly, cancer patients get world class care. Everything is taken care of for them, from financial issues, to emotional coping to driving to and from treatment and appointments, from as far as Hope, by volunteer drivers. You get all the treatments that you need and if you want to be treated till you die, so be it, our very generous health care system will pay for the very expensive drugs."
 
* * *
 
I've said it before, and I'll say it again -- although I know a number of people who've been cured of cancer (my father among them), I know no one cured of CFS.  (Mary Schweitzer does exceptionally well on Ampligen, but it's not a "cure" -- when she goes off it, she relapses.)  Yet people still act like cancer is an automatic death sentence and CFS/ME is a piece of cake to deal with.  Cancer patients, even those with a 90% chance of survival, get oodles of sympathy; CFS patients get insults.
 
It's got to stop.  We must be taken as seriously as the severity of our symptoms, and not told "it could be worse, you could have cancer."  No, it could be BETTER, I could have cancer -- a quick surgery, a few weeks of chemo, and life goes on; unlike CFS, where life never returns to normal.  Even during my 12-year remission, I was not "normal"; I had to rest more and do less than I had before I got sick. 

X-treme denial: Will they hear our whisper?

Hang On Lady, We Going For A Ride! | CFS Untied

Friday, January 21, 2011

Is it CFS or ME or XMRV?

First off, my symptoms developed immediately after and as a result of a high fever/virus/stomach flu, so no one is ever going to convince me that it's all in my head. Plenty of doctors have tried to tell me I'm just depressed or anxiety-ridden, but I stubbornly cling to my conviction that it's a physical problem resulting from a virus.
About 5 years ago, I tried to enroll in a clinical trial for a fibromyalgia medication and was given a C-Reactive Protein blood test. The results were 10x higher than they should have been. There's my proof that the root problem is infection/inflammation, and not emotional.
Over the years, the CDC definition of "CFS" has been watered down, and watered down again, and rewritten, and now describes depression more than it describes what I have. But, by CDC fiat, there's no such thing as ME in the US ... you can only get a diagnosis of CFS, not of ME. (A few radical doctors will still give the ME diagnosis, but most of us are fortunate to find a doctor who even takes our symptoms seriously without hoping for an activist willing to make the controversial ME diagnosis.)
And then in October 2009, a miracle occurred. Dr. Judy and Dr. Vince of Whittemore-Peterson Institute published a paper describing a retrovirus -- XMRV -- in CFS patients. How this relates to the virus found by Elaine DeFreitas nearly 20 years earlier is still unclear, but in the months between the paper being submitted for publication and the paper actually being published, Drs. Mikovits and Lombardi developed a more accurate blood test, which increased the percentage from the 2/3 of CFS patients mentioned in the published paper to nearly 100% of CFS patients they tested provably having the new retrovirus. A move is afoot to change the name from XMRV (xenotropic murine retrovirus) to HGRV (human gamma retrovirus) to eliminate the claim that it's just contamination from lab mice ... the lab in which it was discovered was never home to any mice, so that's not possible, which would then provide us a new name for our condition: HGRAD -- human gamma retrovirus associated disease. Sounds a lot more serious than Chronic Fatigue Syndrome, huh?
The original blood test was $650 and not entirely accurate. We've been advising patients to hold off on testing if they can -- obviously, if you need a blood test NOW to submit proof you're legitimately disabled, that's one thing, but if you're just curious about your status, wait until the price comes down and the accuracy goes up. If you plan to try anti-viral drugs, you'll have to have another test, to check your titers, just before you go on the drugs, and another later to verify whether the titers have gone down, so why spend $650 three times if you can get away with spending it only twice?
Rumor has it that a new, more accurate test will be available in the next few months. I don't know whether it's still going to cost $650 or if the price will go down a bit.
What do you get for your $650? A 45-day process in which the virus is grown, identified, and double-checked by multiple XMRV experts. It's time-consuming, and that's why it costs so much, not because someone's getting rich quick off the tests.
I've always said that once there's a blood test for CFS, there's going to be some shake-up in the patient population. Some who were told they have CFS will be juggled over to a more accurate diagnosis of depression or MS. Some who were told they have depression will test positive for XMRV and come over to our camp. I think the total number of patients will be about the same, just that some of the names will be changed as misdiagnoses are corrected.
After years of ranting about misdiagnosis by lazy doctors who don't know (or don't care) what they're talking about, the ultimate irony would be for me to be one of those misdiagnosed. So far, not having had the XMRV testing, all I can say is that the C-Reactive Protein proves it's not just "all in my head"; there's something physical very wrong, so we can dismiss any diagnoses of depression or anxiety or laziness as inaccurate.
Nonetheless, it gave me ammunition I didn't have before to fire back at the accusers (some in this blog) who think that my only problem is that I don't want to work or am in denial because I don't want the stigma of mental illness.
Where this goes from here is anyone's guess. But the most important part for patients is that the genie is out of the bottle and Reeves, Wessely & Co. cannot stuff it back in. Statistically, it takes 17 years for an experimental treatment to become a commonly-accepted treatment, so it'll be 2026 before we can expect XMRV (or HGRAD or whatever they end up calling it) to be on the radar of most doctors; the change will not come overnight. But the crucial first step has been taken.
OK, I'll be pushing 70 in 2026, and a lot of our current activists will be even older (or dead), so it's probably too late for us, but there are younger activists, much younger than me -- Jodi Bassett, Jenni Saake, Andrea Whittemore -- who are young enough to get some benefit from this discovery. Those who are being diagnosed now will not know the struggle we went through to be taken seriously. This is both a good and a bad thing -- some of my younger co-workers were so used to women's equality that they found it hard to believe that the battle was being fought as recently as my generation, and that abortion was still illegal when they were born -- in a way, it pleased me that the change was so rapid that they were completely unaware that what they were taking for granted became so ingrained in society in such a short time. And in another way, it troubled me that they didn't recognize what only one generation earlier had fought tooth and nail to accomplish.
XMRV Bloggerama Day 2010 -- XMRV taken for granted in 2026 -- that'll be a dream come true, even if some of us are not here to see it
LINKS:
www.CFSFacts.org -- dispelling the myths and providing the facts
Now on Facebook http://www.facebook.com/home.php?sk=lf#!/pages/CFS-Facts/491983490593?ref=nf
Blogging at http://cfs-facts.blogspot.com/

Slightly Alive: The relationship of XMRV to CFS and M.E.

XMRV Bloggerama Day

Have you blogged about XMRV yet today? http://www.facebook.com/event.php?eid=163069410406270 Mine contributions are pretty basic, but find them at http://www.InfertilityMom.blogspot.com/ and http://www.GivenMeaThorn.blogspot.com/ - please take a moment to leave a comment on one of the blogs and help us bump up our google search numbers. Thanks! :)
Location: From your own home.
Time: 12:30AM Friday, January 21st

A Valentine for you

 
If you can't afford to buy your sweetie a Valentine ... make one instead!

Thursday, January 20, 2011

Free Cell Phones for Low-Income People

 
Currently available in 31 states, but check back frequently for expansion of the program.
 
Alabama, Arkansas, Connecticut, DC, Delaware, Florida, Georgia, Illinois, Louisiana, Maine, Maryland, Massachusetts, Michigan, Mississippi, Missouri, Nevada, New Hampshire, New Jersey, New York, North Carolina, Ohio, Pennsylvania, Puerto Rico, Rhode Island, South Carolina, Tennessee, Texas, Virginia, Washington, West Virginia and Wisconsin.

Monday, January 17, 2011

X-Files and CFS

FM/CFS/ME RESOURCES - CFS - Treatments Which Are Not Worth Trying

Lies, Damned Lies And Medical Science

 Lies, Damned Lies And Medical Science

Is there something wrong with the scientific method? Two of the most thought provoking articles debunk the public illusion that the scientific method--including placebo-controlled randomized trials and peer-review of journal reports, are at all reliable safeguards against bias in medical and behavioral research. Independent analyses show that the overwhelming majority of reported scientific findings are later proven invalid. An article in The Atlantic, "Lies, Damned Lies, and Medical Science" by David Freedman, is a fascinating profile of Dr. John Ioannidis, a prominent, highly regarded epidemiologist, who says that as much as 90% of the published medical information that doctors rely on is flawed. In 2005, Dr Ioannidis published two articles--one in PLoS Medicine, the other in JAMA--that debunked much of what passes the peer review process of medical journals--including placebo-controlled trials that are touted as 'the gold standard.'  "Much of what medical researchers conclude in their studies is misleading, exaggerated, or flat-out wrong..." The reason that many false scientific theories continue to be considered true even after they are proven wrong is powerful stakeholders--in particular, pharmaceutical companies, healthcare providers and government public health service agencies--all of who are invested in their application.
Vera Hassner Sharav, AHRP

Sunday, January 16, 2011

Making Sense of ME/CFS

From Frank Twisk:
 
On December 13th, 2010
we submitted a Letter to the Editor of Occupational Medicine

Making sense of ME/CFS: the need for a biological-oriented approach.

in which we comment on an article of Wessely et al.

Making sense of fatigue: the need for a balanced approach.
Occup Med (Lond) 2010;60:665-666.
doi: 10.1093/occmed/kqq166.
Harvey SB, Mykletun A, Wessely S.

which itself was a comment on

Making sense of fatigue.
Occup Med (Lond) 2010; 60:326-329.
doi:10.1093/occmed/kqq014.
Newton JL, Jones DEJ.


Our letter was not accepted for publication.

While Wessely and co are allowed by the Editor to reiterate their
mental examination is the most effective way of diagnosing "CFS" and
CBT/GET is an evidence-based effective treatment for "CFS"-claim
in his journal,

the Editor uses a previous article of ours in another journal

Chronic fatigue syndrome:
Harvey and Wessely's (bio)psychosocial model
versus a bio(psychosocial) model
based on inflammatory and oxidative and nitrosative stress pathways.
BMC Med. 2010 Jun 15;8(1):35. doi:10.1186/1741-7015-8-35.
Maes M, Twisk FNM.
http://www.biomedcentral.com/content/pdf/1741-7015-8-35.pdf

as an argument not to publish our counter arguments in his journal.


--------------------------------------------------------------------------------------------------------------------------------------------

Making sense of ME/CFS: the need for a biological-oriented approach.


Summary:


Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS),
a multi-system disease, 
is declared to be a controversial disease by various others.

In this letter we substantiate
why the (bio)psychosocial model of Harvey and Wessely is largely inadequate
to explain the pathophysiology of ME/CFS.

Looking at the evidence, biological aberrations
(e.g. inflammation, immune dysfunction, infections,
oxidative and nitrosatieve stress, and mitochondrial dysfunction)
should be key players in a bio(psychosocial) model for ME/CFS.

Since exertion intensifies the underlying pathophysiology,
exercise therapy/cognitive and behavioural focused therapies (GET/CBT),
as promoted by advocates of a bio(psychosocial) model,
are potentially harmful for many patients.

Future research should therefore be aimed at
interventions to reverse the biological abnormalities,
thereby promoting recovery or improvement.


 
Letter:


Dear Sir,

With interest we have taken notice of
the observations raised by Newton and Jones (1);
the arguments raised by Harvey, Mykletun and Wessely (2); and
the reply by Newton and Jones (3).

We endorse the arguments made by Newton and Jones
that the imbalance in the biological and psychosocial aspects of ME/CFS should be addressed;
that "fatigue" s accepted by the clinical community to be biological in its origin;
that "fatigue" has profound psychological consequences; and
that psychological problems are secondary rather than primary phenomena (3,4).

Harvey, Mykletun and Wessely (2) state that
"approaches that dichotomize the mind and body …
ignore the current evidence base and are likely to be suboptimal".

However, the explanatory variables in the (bio)psychosocial model
of Harvey and Wessely (5) are mainly psychosocial ones.

The studies cited by Harvey and Wessely (2) used to endorse the argument
"that attempts to identity a consistent pattern of biological abnormalities, have failed"
are highly selective.

As explained (6),
Harvey and Wessely's (bio)psychosocial model
does not encapsulate the biological pathophysiology of ME/CFS,
despite abundant evidence of various organic abnormalities.

Although ME/CFS is a heterogeneous disorder (7,8),
many, if not all, ME/CFS patients suffer from
inflammation, immune dysfunction, infections,
oxidative and nitrosative stress, intestinal hyperpermeability, etc.

These aberrations, demonstrated in many studies (9,10),
are encapsulated in the inflammatory and
oxidative and nitrosative stress model of ME/CFS (6).

Advocates of bio-psychosocial models
should include these biological pathways in their models.

Harvey and colleagues state that
"randomized control studies have established
the effectiveness of cognitive and behavioural focused therapies in .. CFS ..".

They fail to discuss recent reviews (11),
which demonstrate that
the evidence base for these cognitive and behavioural focused therapies in ME/CFS is non-existent and
that these therapies are even potentially harmful for many patients,
because graded exercise treatment intensifies the pathophysiological mechanisms in ME/CFS,
such as inflammation, oxidative stress, etc. (11).

In an evaluation by the Belgian government,
the effects of CBT/GET have been analyzed in hundreds of patients with ME/CFS (12).

It was found that ME/CFS did not result in any clinical improvement.

On the contrary,
CBT/GET aggravated  the symptoms of many patients (often up to 30-80% of the patients),
including fatigue, daily physical and psychological functioning (12).

Harvey, Wessely and Mykletun state that
"a simple mental state examination remains
one of the most productive investigations in prolonged fatigue" (5).

However, even for chronic fatigue this assertion is invalid (6).

According to recent study by Jones and colleagues (13)
"chronic fatigue" in general is secondary to medical conditions in 71% of the patients and
accompanied by psychological/psychiatric illnesses in only 15% of the cases.

As explained (6), we strongly reject the recommendation of Harvey and colleagues that
"a simple mental state examination remains one of the most productive investigations" in ME/CFS.

Therefore, we recommend that
future research should scrutinize the above-mentioned pathways and
delineate novel drugs targeting these pathways
to treat this complex multisystem disease,
instead of iterating on the psychosocial aspects (6).



Frank N.M. Twisk and Michael Maes.




References

1.   Newton JL, Jones DEJ.
      Making sense of fatigue.
      Occup Med (Lond) 2010; 60:326-329. doi:10.1093/occmed/kqq014.
2.   Harvey SB, Mykletun A, Wessely S. Making sense of fatigue: the need for a balanced approach.
      Occup Med (Lond) 2010;60:665-666. doi: 0.1093/occmed/kqq166.
3.   Newton JL, Jones DEJ.
      Making sense of fatigue. Reply.
      Occup Med (Lond) 2010;60:666-667. doi:10.1093/occmed/kqq169.
4.   Matsuda Y, Matsui T, Kataoka K, Fukada R, Fukuda S, Kuratsune H, et al.
      A two-year follow-up study of chronic fatigue syndrome co-morbid with psychiatric disorders.
      Psychiatry Clin Neurosci 2009;63:365-373. doi: 10.1111/j.1440-1819.2009.01954.x.
5.   Harvey SB, Wessely S.
      Chronic fatigue syndrome: identifying zebras amongst the horses.
      BMC Med 2009;7:58. doi:10.1186/1741-7015-7-58.
6.   Maes M, Twisk FNM.
      Chronic fatigue syndrome: Harvey and Wessely's (bio)psychosocial model
      versus a bio(psychosocial) model based on inflammatory and oxidative and nitrosative stress pathways.
      BMC Med 2010;8:35. doi:10.1186/1741-7015-8-35.
7.   Wessely S. Chronic fatigue syndrome.
      Summary of a report of a joint committee of the Royal Colleges of Physicians, Psychiatrists and General Practitioners.
      J R Coll Physicians Lond 1996;30:497-504.
8.   Zhang L, Goudh J, Christmas D, Mattey D, Richards S, Main J, et al.
      Microbial infections in eight genomic subtypes of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).
      J Clin Pathol 2010;63:156–164. doi:10.1136/jcp.2009.072561.
9.   Gow JW, Hagan S, Herzyk P, Cannon C, Behan PO, Chaudhuri A.
      A gene signature for post-infectious chronic fatigue syndrome. BMC Medical Genomics 2009;2:38. doi:10.1186/1755-8794-2-38.
10. Kaushik N, Fear D, Richards SC, McDermott CR, Nuwaysir EF, Kellam P, et al.
      Gene expression in peripheral blood mononuclear cells from patients with chronic fatigue syndrome.
      J Clin Pathol 2005;58:826-832. doi:10.1136/jcp.2005.025718.
11. Twisk FNM, Maes M.
      A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET)
      in myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS):
      CBT/GET is not only ineffective and not evidence-based,
      but also potentially harmful for many patients.
      Neuro Endocr Lett 2009;30:284-299. NEL300309R02.
12. Maes M, Twisk FNM.
      Chronic fatigue syndrome: la bĂȘte noire of the Belgian health care system.
      Neuro Endocrinol Lett 2009;30:300-311. NEL300309R04.
13. Newton JL, Mabillard H, Scott A, Hoad A, Spickett G.
      The Newcastle NHS Chronic Fatigue Syndrome Service: not all fatigue is the same.
      J R Coll Physicians Edinb 2010;40:304-307. doi:10.4997/JRCPE.2010.404.

Research dollars and misc frustrated rant

 
Roughly 35,000,000.00 has gone down a drain on ridiculous research.