Saturday, January 9, 2010

FM patient's blog -- pro photographer

THE NICEGUIDELINES BLOG

 

THE NICEGUIDELINES BLOG VERSUS THE NICEGUIDELINES

These are NOT the NICEGuidelines. This is "The NICEGUIDELINES BLOG." What are the differences: The NICE Guidelines are biased publications based on the GOBSART (Good Old Boys Sitting Around a Table) approach. This Blog however is not only evidence based but also uses critical reading to judge papers and articles. I also use common sense and listen to others. And finally I read both psychiatric and medical evidence and opinions from around the world to come to a conclusion.
I'm not sponsored by anybody or paid by whatever company as seems to be the norm with many psycho people who publish the same article almost on a weekly base. So if you value an opinion, formed as a result of participating in many ME activities, for example being bed bound for years, you have come to the right BLOG. All these activities have allowed me to form an opinion as a Doctor and as a Patient. And that is important as the voice of the latter is discarded by many including NICE.
If you don't read this blog, you will miss out on "accredited" medical education. If you do read it, you may actually become a doctor who doesn't stop thinking or forgets to ask critical questions. Many good things, including satisfied patients are at your command. So, if you arrived here for the straightforward GOBSART approach, I will disappoint you. If you are interested in forming your own opinion about ME, and other interesting things, read on!


About Dr. Speedy.

I am a Family Physician or GP as it is called in Australia or the UK. I am also an ME patient unfortunately. Bedbound that is. So at the moment I'm in private practice so to speak. I've got only one patient, ME, or is it me? I graduated as a doctor a long time ago, and I am the founder and editor of The NICEGUIDELINES BLOG, an internet based ME BLOG that is devoted to critical reading and cheering you or ME up.
I have the following conflict of interest: I would like to get better and see that the wasting of public money on CBT (talk therapy for a neurological disease, really helpful) and other silly therapies for ME stops, and will be used in better ways. My goal has always been to help, and if possible, cure patients. With this disease you will soon find out that many psychiatrists and psychologists are only in it to make money and get their name in the spotlight. And what happens to and with the patients is irrelevant.
I stand to benefit both mentally, physically and also financially if this silliness would stop, and I would get my health back, and I can go back to work and have a normal life again. Please evaluate my postings with this in mind! And remember, there are also (lots of) psychiatrists and psychologists who haven't switched their brain off.
 
 
 
 

Friday, January 8, 2010

3d leading cause of death? Doctors!

                  What is the third leading cause of death after heart disease and cancer? That would be the US. Medical system! The total medically-caused deaths every year is over 225,000. And the statistics were generated in July 2000!

                  This includes over 106,000 deaths from FDA approved medicines. The same FDA that lets itself be paid by pharmaceutical firms. The same agency that routinely tries to ban alternative medicines that have an excellent safety record and whose only crime is that they compete with Big Pharma FDA approved drugs.

                  In an exclusive interview Dr. Barbara Starfield discusses her shocking study and why things are getting worse since its original publication.

               
                  http://blogs.healthfreedomalliance.org/an-exclusive-interview-with-barbara-starfield/
 


Another oldie but goodie worth a re-visit

 
Another useful one that's buried far enough back that a new reader might not discover it, along with

Life as we know it: CFS/Fibro Symptom Checklist

An oldie but goodie

 

This prior post is even more powerful now, in light of the XMRV research that proves this is absolutely not "all in our heads".  The only ones who need their heads examined are the doctors.
 
The post begins:
"A woman who has been ill with CFS for years but without a diagnosis, even after she is diagnosed, is very vulnerable and this attracts doctors who need to control and blame the patient, who need this type of power for their egos."
Greenhalgh, S (2001). Under the medical gaze: facts and fictions of chronic pain. Berkeley: University of California Press.
 
and ends:
"It is not the patients who are disturbed, it is the physicians who are psychologically disturbed because they ignore the data, and whatever data there is, they manipulate it to say what they want it to say. -- Muhammed B. Yunus, M.D."
 
 
 
 
 
 

Thanks!

I really should again extend thanks to all those who make this blog possible.  Not everything is written by me; an awful lot is cribbed from other sources.   Just three names (of many) that come to mind: Tom Kindlon, statistician; Mary Schweitzer, professor; Ellen Goudsmit, psychologist.  People with a lot more expertise in their areas of expertise than I have, and who say it so clearly that there's no point in my trying to re-explain it in my own words.  (And, I'll admit, some of what I'm re-posting, I don't understand well enough to explain the critical parts, only the conclusions.)
 
Big bouquets to all my "ghostwriters", and to John O'Connor, who unfailingly knows what I need before I need it.  I cannot tell you how many times over the years I have thought "I need to google up some information about X" and when I turn on the computer John has already googled up exactly what I need and it's waiting in the mailbox.  How he does that from a continent away is beyond me, but I'm infinitely grateful for his mind-reading capabilities.
 
I couldn't do it without you.
 
 
 


Contrasting speeds that it takes to publish two studies by Simon Wessely

Contrasting speeds that it takes to publish two
studies by Simon Wessely and Anthony Cleare


I thought some people might be interested in the following observation.

The KCL have recently published research on XMRV which they clearly got
published very quickly (most likely it was all done in the second half of
2009 or perhaps even the last three months).

This contrasts sharply with another study which found that those who did not respond to CBT had low cortisol.  [Ed. Note: i.e., those patients had ME/CFS and not depression misdiagnosed as CFS.]

These results were known in early 2003 (or before) as Anthony Cleare
presented them in Feb 2003 http://www.cdc.gov/cfs/meetings/2003_02.htm  :

"Cleare [27] found that those responders to CBT (43% of the sample at end
of treatment) had baseline urine cortisol levels close to normal whereas
those who did not respond had baseline levels below normal.
This indicates that those who were most impaired on hypothalamic-pituitary-adrenal (HPA) functioning might have been the least able to improve with graded activity interventions.
Clearly, a better understanding of subtypes is needed to determine why only
certain patients benefit from these non-pharmacologic interventions."

[27] Cleare AJ. What psychopharmacology tells us about the
pathophysiology of medically unexplained fatigue. Paper
presented at the meeting towards understanding the cellular
and molecular mechanisms of medically unexplained fatigue;
2003; Cold Spring Harbor Laboratory, NY: The
Bradury Center.

[Quote taken from: Jason LA, Torres-Harding S, Brown M, Sorenson M, Julie
D, Corradi K, Maher K, Fletcher MA (2008).  Predictors of change following
participation in non-pharmacologic interventions for CFS. Tropical Medicine
and Health 36, 23-32]

However, this finding which could have for example influenced clinical
practice (e.g. the NICE guidelines), was not published till the middle of
2009:

Does hypocortisolism predict a poor response to cognitive behavioural
therapy in chronic fatigue syndrome? Roberts AD, Charler ML, Papadopoulos
A, Wessely S, Chalder T, Cleare AJ. Psychol Med. 2009 Jul 17:1-8. [Epub
ahead of print] PMID: 19607750 [PubMed - as supplied by publisher]

This is despite the fact that another part of this study (it is referenced
in the Roberts (2009) paper as giving further details on the study) was
published back in 2004:

Roberts ADL, Wessely S, Chalder T, Papadopoulos A, Cleare AJ (2004).
Salivary cortisol response to awakening in chronic fatigue syndrome.
British Journal of Psychiatry 184, 136-141.

As some people will be aware, people promoting CBT for CFS in the UK have
not been particularly interested in subgroups.  CBT is "sold" as being
suitable for all.
If the results that efficacy of CBT might depend on cortisol readings,
clinical practice might be very different now and indeed research might
have moved in a different direction to investigate the different sorts of
patients.

[I explore the issue of predictors in non-pharmacological interventions for
CFS in a letter I have had pubished,  Letter to the Editor: Stratification
using biological factors should be performed in more CFS studies. Kindlon
T. Psychol Med. 2009 Oct 12:1. [Epub ahead of print] No abstract available.
PMID: 19818203]

Tom

How does cognitive behaviour therapy reduce fatigue?

Another great analysis by Tom Kindlon!
 
 
How does cognitive behaviour therapy reduce
fatigue in patients with chronic fatigue syndrome? The role of physical
activity


The pedometer data and a few extracts:


The three studies were:
Knoop H, van der Meer JW, Bleijenberg G (2008). Guided
self-instructions for people with chronic fatigue syndrome: randomised
controlled trial. British Journal of Psychiatry 193, 340-341.

Stulemeijer M, de Jong LW, Fiselier TJ, Hoogveld SW, Bleijenberg G
(2005). Cognitive behaviour therapy for adolescents with chronic
fatigue syndrome: randomised controlled trial. British Medical Journal
330. Published online : 7 December 2004. doi
:10.1136/bmj.38301.587106.63.

Prins JB, Bleijenberg G, Bazelmans E, Elving LD, de Boo TM,
Severens JL, van der Wilt GJ, Spinhoven P, van der Meer JW (2001).
Cognitive behaviour therapy for chronic fatigue syndrome: a
multicentre randomised controlled trial. Lancet 357, 841-847.

================

The approaches were all based on CBT manual:
"Treatment was based on the manual of CBT for
CFS described in detail by Bleijenberg et al. (2003)
and effectively reduced fatigue severity in all trials."

Bleijenberg G, Prins JB, Bazelmans E (2003). Cognitivebehavioral
therapies. In Handbook of Chronic Fatigue
Syndrome (ed. L. A. Jason, P. A. Fennell and R. R. Taylor),
pp. 493-526. Wiley: New York.

=================

Table 2. Baseline, second assessment and change scores on fatigue
severity and physical activity in the group of included patients per
treatment condition

Prins et al. (2001) (n=211)
Treatment condition . CBT Control
(n=70) (n=141)

Fatigue severity:
----------------

Baseline
52.4 (4.0) 51.7 (4.1)

Second assessment
40.3 (10.5) 45.8 (8.7)

Change score
-12.1 (10.3) -6.0 (9.2)

Physical activity:
-----------------

Baseline
67.4 (21.8) 64.5 (19.7)

Second assessment
68.8 (25.2) 64.9 (21.7)

Change score
1.4 (18.5) 0.4 (16.4)

=========================
Knoop et al. (2008) (n=132)
CBT Control
(n=58) (n=74)

Fatigue severity:
----------------

Baseline
49.5 (5.1) 49.6 (5.7)

Second assessment
38.9 (10.8) 45.7 (8.9)

Change score
-10.6 (11.1) -3.9 (8.4)


Physical activity:
-----------------

Baseline
63.1 (23.5) 63.5 (21.8)

Second assessment
67.3 (22.5) 67.8 (21.4)

Change score
4.3 (20.4) 4.3 (21.0)

==============================

Stulemeijer et al. (2005) (n=58)

CBT Control
(n=28) (n=30)

Fatigue severity:
----------------

Baseline
52.3 (4.1) 51.3 (4.4)

Second assessment
24.8 (14.1) 42.9 (13.9)

Change score
-27.5 (14.2) -8.4 (13.4)


Physical activity:
-----------------

Baseline
65.6 (22.4) 65.0 (20.1)

Second assessment
75.8 (21.7) 67.7 (23.8)

Change score
10.3 (21.7) 2.7 (28.1)

CBT, Cognitive behaviour therapy.
Values are given as mean (standard deviation).

=========
Information on the outcome measures/instruments:

"Instruments:

Fatigue
The subscale fatigue severity of the Checklist Individual
Strength (CIS) was used to indicate the severity
of fatigue experienced by patients. It consists
of eight items which are scored on a seven-point
Likert scale. The sum score varies between 8, no fatigue,
and 56, severe fatigue. The CIS is a reliable and
valid instrument for the assessment of fatigue in CFS
(Vercoulen et al. 1994; Dittner et al. 2004). A common
cut-off score for severe fatigue is 35 (or higher), which
is about two standard deviations above the norm score
for healthy patients.

Physical activity

Actigraphy was used to assess physical activity in all
trials. The Actometer is a motion-sensing device
which is worn around the ankle for 12 consecutive
days. An average daily level of physical activity is
computed over this period, with higher scores indicating
more physical activity. The Actometer is described
in more detail by van der Werf et al. (2000).
They found a significant difference between the mean
Actometer score of CFS patients which was 66 (S.D.=
22) and healthy controls who had a mean Actometer
score of 91 (S.D.=25).
They also identified a group of
patients who scored below the mean score of CFS
patients on 11 out of 12 days and labelled this group
as pervasively passive. We excluded all patients from
our study who missed actigraphy at second assessment."

[TK: My guess is the Actometer score for healthy adolescents (relevant
for Stulemeijer et al. (2005) study) would be higher than 91 (25)m
which was calculated from adult controls as I recall]

=========
Discussion
The data did not support a treatment model in which
the effect of CBT on fatigue is mediated by an increase
in physical activity. CBT did neither cause an increase
in physical activity at the end of treatment (path a) nor
was an increase in physical activity associated with a
reduction in fatigue (path b).
A formal test of the mediation
effect confirmed that CBT yielded its effect independent
of a persistent change in physical activity.

These results are in line with the study of Moss-
Morris et al. (2005) in which it was demonstrated that
not an increase in fitness but a change in preoccupation
with symptoms mediated the effect of GET on
fatigue. The results are also consistent with earlier research
on CBT for CFS in which a reduction in fatigue
was associated with a change in illness beliefs (Deale
et al.1998). In the light of these findings, changing illness-
related cognitions seems to play a more crucial
role in CBT for CFS than an increase in physical activity.

========
[TK: My chief observation is most people would believe that actometer data
is more objective than outcome measures from questionnaires like fatigue
scores.  And as they shown, CBT wasn't increasing activity levels.  These
studies reported improvements in the SF-36 physical functioning subscale,
while again many people might be more impressed by improvements in actual
physical functioning (as measure by a pedometer) not a change in how people
respond to questionnaires!]

Responding to the Media

I have the good (or is it mis?)fortune of having a journalist for a partner and we talk about ME/CFS and the media from time to time. While I hope to write a longer post at some point, the one bit of advice I have for those who have the strength is to actually *phone up* journalists who write crappy pieces about ME/CFS.

Writing letters is good and noble, but the only person who really reads those letters is the editor of the letters page unless there happens to be an unusually large number on a specific piece (which, unfortunately given the energy levels of most of us, is not generally the case). Calling the newspaper/magazine and asking to speak with the writer means he/she has to actually interact with you.

Be polite. Praise when you can (i.e. honey catches more flies than vinegar). Have good data to share. The added benefit of calling is that often you get into his/her contacts book of people to call when there is a story on ME/CFS. (I should also add that this is why giving money to advocacy groups to hire a professional PR person who can wine & dine journalists is very important.)

Personally at this point I think the scandal angle (the CDC or NHS is spending money on psychiatric care while people die) has far more appeal than the "human interest" angle, or in the case of the recent dreadful PLoS One study, playing up the row angle (i.e. "WPI says 'Not so fast!'") will be more productive, but that's just me.

Right. Now that that's off my chest, I'm going to try a bath tonight...

Best,
Michelle


Read about life behind the surface at http://behindthesurface.blogspot.com
 
* * *
I agree that it's best to go straight to the source. 
 
I'm not much on talking on the phone to strangers, I prefer to e-mail.  If you poke around newspaper and magazine websites, there's usually a way to get an e-mail directly to a particular journalist.  Some even list that information with the article, or clicking on the author's name will get you to either an e-mail form or a biography page that has an e-mail link.
 
That way you can formulate your thoughts slowly (I write it over the course of a few days in my word processing program, then cut-and-paste to e-mail), don't have to be on your mental toes enough to respond to sudden changes in direction of the conversation, and can include exact references rather than "some doctor somewhere said something or other about that".  If you're more awake at 3 AM, you can e-mail then, regardless of whether the journalist is in his office. 
But please, don't come out with guns blazing!  Be polite.  "Dear Stupid Idiot" almost guarantees he'll read no further.  "I would like to clear up some misconceptions you apparently have about CFS" works much better.  Including links that he just has to click on makes it more likely that he'll read what you want than if you say "Dr. Cheney has a good article on cardiology" and he's got to google it up for himself.
 
Conversely, when a local journalist wrote a respectful piece about CFS, our support group sent her flowers.
 
 
 
 
 

CoQ10 -- The Energy Maker

Web version: www.prohealth.com/ep/EP010810   
                 

            Coenzyme Q10 -
            The Energy Maker

            With nearly 40 years of medical research showing its importance in managing a wide range of serious illnesses, it's not surprising that CoQ10 has at times been described as "The Miracle Vitamin" and "The New Fountain of Youth."

            Coenzyme Q10 (CoQ10) is a vitamin-like nutrient that is present in virtually every cell of the body and is an essential component of each cell's ability to produce energy. It is also a powerful antioxidant – a chemical that "mops up" potentially harmful substances.

            In order to understand how CoQ10 works, it is first necessary to understand mitochondria. Imagine that each cell in your body is a car. Mitochondria are the engines – or energy producers – in each cell that make your "car" run. It is the job of the mitochondria to supply this energy in the form of adenosine triphosphate (ATP). This is where CoQ10 comes in. To continue the car analogy, it is the oil that enables the engine to work.

            CoQ10 is the catalyst that makes it possible for the mitochondria to produce ATP, the molecule upon which all cellular functions in the body depend.

            The Implications of CoQ10 Deficiency

            Because CoQ10 is so essential to the proper functioning of every cell in the body, it's not surprising that researchers have found a deficiency of CoQ10 may be linked to a number of diverse diseases. A few of the illnesses in which low levels of CoQ10 may be implicated include:

              · Heart Disease
              · Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)
              · Cancer
              · Parkinson's Disease
              · Alzheimer's
              · Migraines

            Small amounts of CoQ10 can be found in foods, primarily meat and fish. The highest amounts are found in organ meats (heart, liver, kidneys) as well as beef, soy oil, sardines, mackerel and peanuts. CoQ10 is also synthesized in bodily tissues. In healthy individuals, the combination of dietary intake and biosynthesis work to maintain normal CoQ10 levels.






            Why do so many people seem to be deficient in CoQ10?

            No one knows for sure. There are likely multiple causes. Perhaps the emphasis in recent years on eating less red meat as well as generally poor eating habits have contributed to reducing our dietary intake of CoQ10. And a number of other factors, such as environmental toxins, chronic diseases and some prescription medications may contribute to the impairment of the body's ability to synthesize CoQ10.

            For example, research has shown that the cholesterol-lowering drugs known as "statins" (Lipitor, Zocor, etc.) not only lower cholesterol, but also inhibit the biosynthesis of CoQ10 by as much as 40 percent.(1)

            Anyone taking medication to lower cholesterol should seriously consider also taking CoQ10 supplements.

            Other types of medications thought to deplete the body of CoQ10 include beta-blockers, diuretics, tricyclic antidepressants, and diabetes medications such as metformin, tolazamide and glyburide.

            CoQ10 and the Heart

            Due to their high energy requirements, the heart and liver contain the most mitochondria per cell and consequently need a very high concentration of CoQ10 in order to function properly. Because of this, much of CoQ10 research has concentrated on heart disease. Researcher Peter H. Langsjoen, MD, FACC, reviewed numerous studies and scientific papers related to the management of heart disease with CoQ10 and found their conclusions to be remarkably consistent: "that treatment with CoQ10 significantly improved heart muscle function while producing no adverse effects or drug interactions."(2)

            Particularly interesting have been the studies showing a strong correlation between very low levels of CoQ10 and congestive heart failure. The severity of the heart failure also correlated with the severity of the CoQ10 deficiency.(3) In general, the sooner patients were given CoQ10 after onset of congestive heart failure, the more dramatic their improvement.

            Cardiomyopathy (inflammation/weakening of the heart muscle) is another form of heart disease shown to benefit from CoQ10 supplementation. In a six-year clinical study, 85 percent of cardiomyopathy patients supplemented with CoQ10 in addition to their conventional treatments improved by one or two NYHA classes (New York Heart Association's functional classification for the four stages of heart failure).(4)

            CoQ10 also appears to be beneficial in the management of hypertension (high blood pressure). In one study of 109 patients, 51 percent were able to stop taking between one and three antihypertensive medications an average of 4.4 months after starting CoQ10 supplementation.(5)

            The Importance of CoQ10 for ME/CFS Patients

            When plasma CoQ10 was analyzed in 58 ME/CFS patients and 22 normal controls, researchers found that CoQ10 levels were significantly lower in the ME/CFS patients than in the normal controls.(6) This finding has far greater implications than the obvious lack of energy experienced by people with ME/CFS. Because CoQ10 is essential to every cell in the body, a severe CoQ10 deficiency can cause mitochondrial dysfunction, which in turn has a serious negative impact on multiple organs and body systems and can ultimately result in heart failure.

            In fact, that is exactly what happens, according to Dr. Sarah Myhill, MD, a UK-based ME/CFS researcher and clinician. In her recent paper, "Chronic Fatigue Syndrome and Mitochondrial Dysfunction," she makes her case that ME/CFS is actually a symptom of mitochondrial failure.(7) Dr. Myhill recommends that ME/CFS patients have their CoQ10 levels checked and begin taking CoQ10 supplements if they are low. She also notes that CoQ10 will work best in conjunction with acetyl L-carnitine, magnesium, D-ribose and Vitamin B3 (niacinamide).(8)

            CoQ10's Role in Other Illnesses

            Because a deficiency of CoQ10 can potentially affect every cell in the body, more and more research is being done to determine how much of a role it may play in other illnesses. Animal and/or preliminary human studies have been conducted to uncover how CoQ10 may work in managing a number of diseases including: breast cancer, melanoma, Parkinson's disease, Huntington's disease, Alzheimer's, and migraines.(9-13) All have had promising results indicating that CoQ10 may be helpful in supporting the prevention or treatment of those diseases.

            How Much CoQ10 is Needed?

            The dosage of CoQ10 used for cardiac patients varies from 200 to 600 mg daily. For ME/CFS, Dr. Myhill recommends from 100 to 400 mg daily, depending on how low CoQ10 blood levels are. There is little danger of taking too much. In one study, CoQ10 was safe and well tolerated in ALS patients who were supplemented with dosages as high as 3,000 mg per day for eight months.(14) The total daily dosage should be divided and taken in 2 to 4 doses throughout the day.

            It is virtually impossible to adequately supplement CoQ10 from dietary sources. To put it into perspective, it would take one pound of sardines, two pounds of beef, or two and one half pounds of peanuts to provide 30 mg of CoQ10. Since anyone who is low in CoQ10 needs much more than 30 mg per day, CoQ10 supplements are the best solution.

            How to Take CoQ10

            CoQ10 is fat soluble, and ideally should be taken with a fatty or oily meal. It could also be taken with a single high-fat food, like an avocado, or even with a teaspoon of olive oil. Another good option would be to take a CoQ10-Vitamin E combo supplement. Not only are both good antioxidants that fight free radical damage, but vitamin E is an oil, which increases the absorption of the CoQ10 – and you don't have to worry about taking it with a fatty meal.

Thursday, January 7, 2010

Pay Attention to the Data Set: More on UK XMRV study

 
May Be Reposted:

I have posted a response under the title, "Pay Attention to the Data Set," to the article, "CFS patients in UK show no signs of suspect virus," in New Scientist online:
<http://www.newscientist.com/article/dn18341-cfs-patients-in-uk-show-no-signs-of-suspect-virus.html>

Pay Attention To The Data Set

Thu Jan 07 04:52:29 GMT 2010 by Mary M. Schweitzer, Ph. D.

There is an old saying in computerized statistics: GIGO. It means garbage in-garbage out - the study is only as good as the data set. In this case, the data set came from patients diagnosed with a version of CFS that is entirely psychiatric. Simon Wessely, one of the co-authors, has stated numerous times that he believes the disease to be a type of neurosis once called "neurasthenia" ("the vapors," a "nervous condition," a "nervous breakdown").

Two more of the seven authors on this study work with Wessely at Kings College, London. Wessely once told a patient with neurally mediated hypotension (suggested as a cause or contributing factor in JAMA, fall 1995) that she could not possibly have CFS because all patients with physically explainable symptoms would have been weeded out before they reached his clinic for diagnosis. Makes for a tautology, then, if there are no physical abnormalities in his patients.

Kings College, London, follows the theory that patients with CFS hold "inappropriate illness beliefs," and they have to re-learn that (1) they are well, through cognitive behaviour therapy (CBT), and (2) they can be reconditioned, through graded exercise therapy (GET) - and then they can happily go back to work and family.

These theories have sent children and even adults to foster care or psychiatric hospitals for the sin of having "chronic fatigue syndrome."

The Kings College picture of CFS can be viewed on their website, at <http://www.kcl.ac.uk/projects/cfs/health/>

If you are pressed for time, read the section called "Letting go of support," at

<http://www.kcl.ac.uk/projects/cfs/health/#Support>

The fact of the matter is that patients so diagnosed do not have the disease that was studied at the Whittemore-Peterson Institute. Most likely, they have a form of depression.

A great deal of useful resarch into biomedical markers and viruses has been conducted using the Fukuda definition for CFS (CDC, 1994). Wessely, White, Sharpe, Cleare, Chalder, et al, however, origionally rejected the Fukuda definition, substituting instead a definition that did not include any physical symptoms but allowed depression. The result, not unsurprisingly, is that most of their patients suffer from some form of depression. (Ironically, the jury is still out on whether CBT/GET even helps the depressed patients.)

In this article, however, the researchers claimed to have used the U.S. CDC Fukuda definition. The definition requires six months of debilitating fatigue plus four our of eight possible physical symptoms. If the correct symptoms are chosen, particularly if interpreted more generally, it is possible to make depressed patients look like they fit the Fukuda definition.

Note what happens if you use the following:

- Six months of fatigue

- Headaches

- Sleep abnormalities

- General aches and pains

- Distraction or confusion

Who needs a retrovirus when "CFS" can be so easily "cured"? According to Kings College, "Our routine treatment is cognitive behaviour therapy ... Some individuals receive CBT over the telephone if they live a long way from the unit or find travelling difficult."

The patients who have tested positive for XMRV in the Mikovits et al studies have very different medical histories. Most have other diagnosed medical conditions - including, but not limited to, Coxsackie B, Adenovirus 4, HHV-6 (Variant A), recurring EBV, HHV-7, cytomegalovirus, chlamydia pneumonae, mycoplasma. Many of them have a nonexistent natural killer cell function, a viral antibody truncated in half (the 37kDa Rnase-L), and/or inverted T-cell ratios. Some who have been sick for decades have developed myocarditis, stem cell cancer, Burkett's lymphoma - and of these, too many have already died.

What on earth do the King's College clinic's patients have in common with those of Dan Peterson at Incline Village, NV? Only the name "chronic fatigue syndrome." There is no shared meaning.

For a true evaluation of the XMRV research, it's necessary not only to follow the process precisely, but also to use a comparable data set. This data set has absolutely nothing in common with the one used by the WPI, NCI, and Cleveland.

And that is what is meant by the old saying, GIGO.

Reviewers of research for publication must pay more attention to the data sets being used. The results mean nothing if you are comparing apples to oranges.

It is also well past time that political entities charged with the health and well-being of the public ALSO pay attention to the way research has been constructed, not just the abstract or the final paragraph.

Without consistency, there is no science. Only opinions.

Mary M. Schweitzer, Ph.D.
 
 
 

Wednesday, January 6, 2010

WPI response to UK XMRV study

http://www.wpinstitute.org/news/docs/WPI_Erlwein_010610.pdf

Official Statement from the Whittemore Peterson Institute Regarding UK Study

The Whittemore Peterson Institute (WPI) has reviewed the paper entitled
"Failure to Detect the
Novel Retrovirus XMRV in Chronic Fatigue Syndrome." This study did not duplicate the rigorous scientific techniques used by WPI, the National Cancer Institute and the Cleveland
Clinic, therefore it cannot be considered a replication study nor can the results claim to be anything other than a failure not just to detect XMRV, but also a failure to suggest meaningful results.

The scientific methods used by WPI are very exact and require specific
techniques to ensure
accuracy. Differences in techniques employed by Erlwein et al. not only
explain their failure to replicate the WPI study, but also render the conclusions meaningless
.
These
differences
include, but are not limited to the following:

1) blood sample volumes and processing;
2) patient criteria/population differences;
3) number and type of tests done to assure accurate results, including white
blood cell
culture;
4) use of a molecular plasmid control in water versus a positive blood
sample; and
5) different primer sequences and amplification protocol used to find the
virus, which
were not validated by a clinical control.

The WPI study was published after six months of rigorous review and three
independent lab
confirmations, proving that contamination had not taken place and that
infectious XMRV was
present in 67 percent of CFS patients diagnosed according to the Canadian
and Fukuda criteria.
In contrast,
this latest study was published online after only three days of
review. Significant and critical questions remain as to the status of patient samples used in the UK study as those samples may have been confused with fatigued psychiatric patients
, since the
UK has relegated
"CFS" patients to psychiatric care and not traditional medical practices.

"Little is known about the prevalence of XMRV world-wide, much less the
incidence of XMRV
in ME/CFS or prostate cancer" emphasizes Dr. Judy Mikovits. "WPI and its NCI
collaborators
are actively engaged with international research teams to investigate these
important questions."
WPI does not recommend the use of anti-retroviral drugs that have yet to be
proven to be
effective in treating XMRV infection. However, several large pharmaceutical
companies have
expressed interest in developing anti-retroviral and immune modulating drugs
that will
effectively treat XMRV associated diseases.

WPI looks forward to the results of other scientific groups around the
world, serious about
replicating its scientific results, by using the same techniques as WPI and
its collaborators.
The
fact that XMRV was detected in 67 percent of the CFS samples in the U.S.
study determined a
significant association between XMRV and CFS, demanding a much more serious
inquiry by
responsible health agencies around the world as to the cause of this
debilitating disease.

Whittemore Peterson Institute
The Whittemore Peterson Institute for Neuro-Immune Disease exists to bring
discovery, knowledge,
and effective treatments to patients with illnesses that are caused by
acquired dysregulation of the
immune system and the nervous system, often results in lifelong disease and
disability. The WPI is
the first institute in the world dedicated to X associated neuro-immune
disease (XAND), and other X
associated diseases, integrating patient treatment, basic and clinical
research and medical
education.



Confining Ourselves: Where’s the Outrage? « A WheelchairJunkie.com

"Many of us involved in disability advocacy dream of a day when those with disabilities in the U.S. unite and form a serious, influential constituency – one much like the NAACP or AARP. ... if we simply united as a body of millions, solidifying our collective voice on a national level, issues like detrimentally-low mobility and in-home care funding would be resolved in an instant – our influence on elected officials would be so great that they'd address our needs to no end."

ADDENDUM:

I was recently provided these resources:

Check out www.aapd.org or www.dc-aapd.org. They are they strongest cross disability US group I have worked with. There is also the international World Institute of Disability.

Words of Wisdom

 


 

British XMRV study shot down

Background: a study performed in England has supposedly found that CFS patients don't have XMRV, but was immediately questioned whether these were True CFS patients or psychiatric patients who were misdiagnosed with CFS because they have fatigue.  www.CFIDS.org promptly published a rebuttal by their medical director, and here's another:
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
  >>>>> Help ME Circle <<<<
>>>>     6 January 2010    <<<<
Editorship : j.van.roijen@chello.nl
mail scanned by Comodo I. Security
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~

Invest in ME

Invest in ME Statement on BBC NEWS Article "Research finds no proof that a virus is the cause of ME"

6th January 2010

The perennial problem of trials such as this from
ICL and those funded by the Medical Research
Council is that they do not use well defined patient
cohorts which can negate the research results.

To replicate a research study the patient samples
used and the methodology have to be the same
and in this case it appears that there are
differences in both compared to the study
published online 8 October, 2009 by the Science
magazine.

The organisations in USA who discovered the
XMRV retrovirus used the Canadian Guidelines to
select patients for their research and  Invest in ME
feel the Canadian Guidelines should be used for all
research.

Those who portray ME as a somatoform illness
are fully aware that using patients who do not fit
strict selection criteria will obviously skew results.
We therefore have serious doubts about the the
results of the ICL research.

If the correct patient cohorts are not participating
in the trials or different methods are used then
this will affect the results.

The result of finding no sign of XMRV would point
to a different methodology to that used in the
research published by the Science magazine 3.7%
of controls tested positive.

The work performed by the Whittemore-Peterson
Institute (WPI) and the National Cancer Institute
and the Cleveland Clinic is of the highest quality
and has been validated by Science magazine.

Much more research is underway and the results
from the first XMRV replication trials such as these
from ICL prove little.

People with ME and their families should expect
these "false" results to be publicised early,
especially as ME has been ignored by the
government and research organisations for
generations.
However, the new XMRV research
has changed the landscape for good and patients
and carers can look forward to a new era of
ME/CFS research based on the biomedical basis
for the illness.

Proper science is now finally being performed.

Those who have delayed or stopped high quality
biomedical research into ME from being performed
in the past, and those who continue to downplay
the significance of the new research from WPI,
will not be in a position to continue this denial for
much longer.

The WPI have promised more exciting news which
we can expect to hear at the forthcoming 5th
Invest in ME International ME/CFS Conference on
24th May in London.


Invest in ME remain convinced that the WPI
research is of monumental importance to the
future of research into ME and we look forward to
the future and the momentum in biomedical
research into ME which the XMRV research has
generated.


Invest in ME
Registered UK Charity Nr. 1114035
www.investinme.org
PO BOX 561, Eastleigh SO50 0GQ


A New Era in ME/CFS Research

5th International ME/CFS Conference
24th May 2010 Westminster, London
http://tinyurl.com/ykdoqkc

Support ME Awareness - Invest in ME


Another CFS blog

 
CFS AND XMRV
THIS IS AN OBJECTIVE BLOG ABOUT CHRONIC FATIGUE SYNDROME, WHAT IT IS, 
WHAT IT ISN'T, AND HOW IT AFFECTS INDIVIDUALS. THE PURPOSE OF THIS 
BLOG IS TO SHARE INFORMATION, PROVIDE EDUCATION AND PROMOTE AWARENESS 
OF THIS DEBILITATING DISEASE. IT DOES NOT PROPOSE TO HAVE ALL THE 
ANSWERS, BUT WILL ENDEAVOUR TO REFER YOU TO HANDY RESOURCES WHEN 
NECESSARY.


HTTP://CFSANDXMRV.BLOGSPOT.COM/

Sunday, January 3, 2010

Joke of the Week

Q: How many CDC "scientists" does it take to change a lightbulb?
A: You only think it's dark. [CDC has denied ME/CFS for 25 years]
 

CoQ10 deficiency

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
  >>>>> Help ME Circle <<<<
>>>>   19 December 2009    <<<<
Editorship : j.van.roijen@chello.nl
mail scanned by Comodo I. Security
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~





http://bit.ly/7c2W0R



PubMed



Neuro Endocrinol Lett.;30(4).



Coenzyme Q10 deficiency in myalgic
encephalomyelitis / chronic fatigue
syndrome (ME/CFS) is related to fatigue,
autonomic and neurocognitive symptoms
and is another risk factor explaining the
early mortality in ME/CFS due to cardi.



Maes M, Mihaylova I, Kubera M, Uytterhoeven M,
Vrydags N, Bosmans E.


Maes Clinics, Antwerp, Belgium. crc.mh@telenet.be.




Myalgic encephalomyelitis / chronic fatigue syndrome
(ME/CFS) is a medical illness characterized by
disorders in inflammatory and oxidative and
nitrosative (IO&NS) pathways.


This paper examines the role of Coenzyme Q10
(CoQ10), a mitochondrial nutrient which acts as an
essential cofactor for the production of ATP in
mitochondria and which displays significant
antioxidant activities.

Plasma CoQ10 has been assayed in 58 patients with
ME/CFS and in 22 normal controls; the relationships
between CoQ10 and the severity of ME/CFS as
measured by means of the FibroFatigue (FF) scale
were measured.


Plasma CoQ10 was significantly (p=0.00001) lower in
ME/CFS patients than in normal controls. Up to
44.8% of patients with ME/CFS had values beneath
the lowest plasma CoQ10 value detected in the
normal controls, i.e. 490 mug/L.

In ME/CFS, there were significant and inverse
relationships between CoQ10 and the total score on
the FF scale, fatigue and autonomic symptoms.


Patients with very low CoQ10 (<390 mug/L) suffered
significantly more from concentration and memory
disturbances. The results show that lowered levels of
CoQ10 play a role in the pathophysiology of ME/CFS
and that symptoms, such as fatigue, and autonomic
and neurocognitive symptoms may be caused by
CoQ10 depletion.


Our results suggest that patients with ME/CFS would
benefit from CoQ10 supplementation in order to
normalize the low CoQ10 syndrome and the IO&NS
disorders.

The findings that lower CoQ10 is an independent
predictor of chronic heart failure (CHF) and mortality
due to CHF may explain previous reports that the
mean age of ME/CFS patients dying from CHF is 25
years younger than the age of those dying from CHF
in the general population.



Since statins significantly decrease plasma CoQ10,
ME/CFS should be regarded as a relative
contraindication for treatment with statins without
CoQ10 supplementation.



PMID: 20010505 [PubMed - as supplied by publisher]

Pacing helps ME



Pacing Helps ME



A recent survey run by the Sussex & Kent ME/CFS Society working with the
Brighton & Sussex medical School amongst people in the South East counties
affected by the Chronic Fatigue Syndrome known as ME has clearly found that
Pacing can help most with the debilitating illness. 440 completed
questionnaires have been analyzed showing that a massive 94% of respondents said that they found the management approach of Pacing to be reasonably or very helpful.



Pacing is all about balancing activity and rest to bring about improvements
in the way the patient feels. The word 'activity' is used in a broad sense,
to include mental and emotional activity, as well as the more obvious
physical sort. Taking a balanced, steady approach to activity counteracts
the common tendency to overdo things. It avoids the inevitable ill effects
that follow. Pacing gives people awareness of their own limitations which
enables them to plan in a positive way how to use energy, maximizing what
they can do with it. Over time, when the condition stabilizes, patients can
very gradually increase activities to work towards recovery.



Although ME/CFS can be a long term seriously disabling illness for many
people there is much that can be done to help patients make improvements as
our survey clearly shows.



National UK charity Action for ME have a booklet available that explains
what Pacing is and how to manage the illness working towards recovery.



www.measussex.org.uk



www.afme.org.uk