Saturday, January 3, 2009

Tom's comments on CBT for CFS

Thanks to Tom for another well-researched and well-thought-out discussion.
 
I went to send a letter to the editor in reply to the following article but
found the journal didn't accept take letters to the editor:

Implementing cognitive behavioral therapy for chronic fatigue
syndrome in a mental health center: A benchmarking evaluation.

Journal: J Consult Clin Psychol. 2008 Feb;76(1):163-71.

Authors: Scheeres K, Wensing M, Knoop H, Bleijenberg G



There were three main points:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
1) As far as I can calculate, if one performs hypothesis testing, one finds
that the values obtained in the MHC are statistically different from the
research studies they compare them to, but they give the opposite impression
in the text (using different language)!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


"Results: One-hundred forty-three CFS patients were referred to the MHC, of
whom 112 started
treatment. The implementation was largely successful, but a weak point was
the fact that 32% of all
referred patients dropped out
shortly after or even before starting
treatment.
***Treatment effect sizes were in the range of those found in the benchmark
studies.***

Conclusions: CBT for CFS can successfully be implemented in an MHC.
Treatment results were acceptable, but the relatively large early dropout of
patients needs attention."

[..]

Results

[..]

"Comparison of treatment effects.

The noncontrolled effect sizes of the implementation study and the benchmark
studies are
given in Table 4 and in Figures 1 and 2. The mean pre-post
treatment effect size of the four benchmark studies for fatigue was
{1.02 (Sharpe et al., 1996) + 2.05 (Deale et al., 1997) + [3 * 1.25
(Prins et al., 2001)] + 1.83 (Stulemeijer et al., 2005)} / 6 = 1.44
(95% confidence interval [CI] = 0.97, 1.89). This is somewhat
higher than the effect size of fatigue in the MHC, which was 1.12
(95% CI + 0.85, 1.38). For physical functioning, the mean pre-
post treatment effect size of the benchmark studies was {1.93
(Deale et al., 1997) = [3 * 0.71 (Prins et al., 2001)] + 1.19
(Stulemeijer et al., 2005)} / 5 = 1.04 (95% CI = 0.63, 1.44). This
is again somewhat higher than the effect size at the MHC for
physical functioning, which was 0.64 (95% CI = 0.38, 0.89)."

[..]

Discussion

[..]

"***The results of the present study contradict the results of
Quarmby et al.'s (2006), who found a discrepancy in treatment
effect between their RCT and clinical results***. However, those
effect differences might be explained by the fact that their RCT
was extremely effective, which was the result of including only
one specialized therapist who was very experienced with CFS."


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
2) One didn't have to be that well to be considered recovered
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The recovery rate was analyzed by calculating
the percentage of patients clinically significantly improved.
Patients were defined as clinically significantly improved at posttreatment
if they had a reliable change index + 1.96 on the CIS-20
Fatigue Severity subscale, a Fatigue Severity score <= 35, and a
Rand-36 Physical Functioning score >= 65 (Vercoulen et al., 1999)."

I'm appending my comment on this from the related paper.


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
3) (less important) The Prins 2001 study is described as having used the CDC
'94 criteria (even though the symptom criteria weren't used i.e. the
patients weren't required to have 4 out of the 8 symptoms).  Gis Bleijenberg
was involved in both studies and is well aware of what the CDC criteria
involve as he was on the review panel the CDC put together to re-assess the
criteria
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Prins et al. (2001)

Inclusion criteria:
CDC criteria for CFS

Cognitive behaviour therapy for chronic fatigue syndrome: a multicentre
randomised controlled trial.
Prins JB, Bleijenberg G, Bazelmans E, Elving LD, de Boo TM, Severens JL, van
der Wilt GJ, Spinhoven P, van der Meer JW.
Department of Medical Psychology, University Medical Centre, Nijmegen, The
Netherlands. j.prins@cksmps.azn.nl


~~~~~~~~~~~~~~~~~

Bye,

Tom Kindlon





~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thresholds for recovery were set very very "low" (perhaps the bottom
percentile and 5th lowest percentiles of the healthy adult population on the
two scales used)

Tom Kindlon (4 October 2008) Irish ME/CFS Association - for Information,
Support & Research

The thresholds for recovery seem very very low:
"Patients were defined as being CSI at post treatment if they had a reliable
change index > 1.96 on the CIS fatigue severity subscale [22], a fatigue
severity score <= 35 and a Rand-36 physical functioning score > = 65".

Many of the patients already likely had a "physical functioning score >=65"
given the mean (SD) values before treatment were: "Physical impairment (Rand
36) 54.0(23.4)"

And the threshold for recovery was only 0.47 SDs above the initial mean
score.

I am aware of the questions on the SF-36 PF subscale (scores can range from
0 to 100 with the higher the score, the better their "physical
functionaling") and I don't believe most healthy adults would believe
scoring 65 on the SF-36 PF scale would mean they were recovered.

As a study[1], that was co-written by one of the authors of this study (Gijs
Bleijenberg), pointed out, a community study found that "healthy adults
without a chronic condition" had "a mean score of 93.1 (SD 11.7)." The
authors of that study[1] pointed out they did not know the exact
distribution of the SF-36 subscales - they just made the assumption that the
mean - 1SD would represent a threshold for the 85th percentile and rounded
this figure to 80.

The threshold in the current study is 65. That is 2.4 SDs below the healthy
population's mean score. If the same assumptions were made (i.e. that the
curve was normally distributed), this would represent the bottom percentile!

For the CIS fatigue severity subscale (where the possible scores are 8-56
with the higher the score, the greater the fatigue), that same study that
Gijs Bleijenberg co-wrote[2] used (to calculate thresholds i.e. from another
study) a "normal group of 53 healthy adults with a mean age of 37.1 (SD
11.5)" who had "a mean score on the CIS-fatigue of 17.3 (SD 10.1)."[3]

The ages of those healthy adults are similar to the ages of the CFS patients
in this study: Mean (SD) 38.1 (10.2).

In that study[1], they estimated that the 85th percentile (mean+1SD) would
be 27 (due to rounding). This study uses 35 or the mean + 1.7525SD or the
95th percentile.

Put another way, patients in this study could be considered recovered if
they scored in the bottom percentile on the physical functioning subscale
(of the SF-36) and in the 5th lowest percentile on the CIS-fatigue scale!

Tom Kindlon

[1] Knoop H, Bleijenberg G, Gielissen MF, van der Meer JW, White PD. Is a
full recovery possible after cognitive behavioural therapy for chronic
fatigue syndrome? Psychother Psychosom. 2007;76(3):171-6.

[2] Aaronson NK, Muller M, Cohen PD, Essink-Bot ML, Fekkes M, Sanderman R,
Sprangers MA, te Velde A, Verrips E: Translation, validation, and norming of
the Dutch language version of the SF-36 Health Survey in community and
chronic disease population. J Clin Epidemiol 1998; 51: 1055-1068.

[3] Vercoulen JHMM, Alberts M, Bleijenberg G: De Checklist Individual
Strength (CIS) (The Checklist Individual Strength). Gedragstherapie
(Behavioural Therapy) 1999; 32: 642-649.
 
 
 



Friday, January 2, 2009

New Year's Assessment

The improvement over the past 12 months has not been so terrific  that it's
worth raving about (small steps, small steps), but when I think  about what I
felt like on New Year's 2003, I can see a vast improvement.   I'm now, more
often than not, sleeping 5-6 hours a night instead of 2, and doing  it without
sleeping pills (the Tramadol takes enough edge off the pain that I  can sleep,
and my precious few Vicodin actually remove the pain entirely when I  decide
it's bad enough to take one of those).

The dizzy spells are still there, but not as constant.  They now go  away
when I lie down, instead of needing to lie smack in the middle of the bed  to
ensure I would not fall off if I passed out.  Which also is no longer a  daily
occurrence.

Am I ready to go back to work?  No.  But in early 2003, I  would've told you
I was a lot closer to dying than to working, whereas now I'm  seeing light at
the end of the tunnel and thinking that maybe, just maybe, I can  defy the
odds and eventually go back to a desk job instead of something  that can be done
in bed.

As the old-timers will recall, 2003 was the year that I was on the 
experimental sleeping pills, and spent most of the year running a 101 fever,  burning
off the virus.  Getting my immune system back due to sleeping  well was
definitely the turning point for me.  Cajole, bully,  threaten, sue, whatever you
need to do, to get something that puts you to sleep  consistently.




The Latest from One Click

Recommended ME/CFS Treatment Often Detrimental

This SPECT scan shows the definite
decrease in blood flow to an ME/CFS
patient's brain, Harvard Medical School

Frequently advised treatments for patients with chronic fatigue syndrome (ME/CFS) in The Netherlands appear to lead to deterioration of their condition as often, or even more often, as to improvement. This applies to cognitive behavioural therapy (CBT) and exercise therapy. Other treatments have far more positive results. These are the findings of a study by NIVEL (Netherlands Institute for Health Research) among the ranks of the ME/CFS patient organizations.
Press Release, Hilversum/Groningen/Zwolle, The Netherlands



Wednesday, December 31, 2008

CFS and ME in Medical Textbooks

Thanks to Tom for this one. How can doctors fix what they haven't been taught? It's my own experience that they're being taught things about CFS that were disproven 20 years ago. It's not depression, psychotropic drugs don't work, there are biological abnormalities (if only the right tests were done...) But the doctors aren't being taught that, so how can they help us????


> [An example of information that is in medical textbooks has been scanned
> in
> by an individual and saved as pdfs (see links below). Pages 1281-1285 are
> in the section written by Profs. Peter Denton White and Anthony W Clare.
> Peter White amongst other things was one of the external peer reviewers of
> the CDC's CFS program recently. The files can be seen at:
> 8028 KB http://rapidshare.com/files/146351947/Kumar_1-7.pdf [AOL: > href="http://rapidshare.com/files/146351947/Kumar_1-7.pdf">Here 2959
> KB
> http://rapidshare.com/files/146351948/Kumar_8-10.pdf
> [AOL: > href="http://rapidshare.com/files/146351948/Kumar_8-10.pdf">Here 3645
> KB
> http://rapidshare.com/files/146351949/Kumar_11-13.pdf [AOL: > href="http://rapidshare.com/files/146351949/Kumar_11-13.pdf">Here. I'm
> alos appending the information in plain text. Tom]
>
>
> From the minutes of of the CFSAC meeting on Oct 28, 2008
> http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac20081028min.pdf
> [AOL: > href="http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac20081028min.pdf">He
> re]
>
>
>
> Dr. Jason's Presentation
>
> Dr. Jason said that he also planned to give his presentation at the Reno
> IACFS/ME conference.
>
> He noted that there are about 200 publications each year on CFS, according
> to Freidberg and Associates. It is unclear how CFS is represented in the
> published literature, particularly with medical textbooks. Medical
> textbooks
> are important because they are:
>
>
> . A cornerstone in the training of medical staff and students.
> . A main source of references and reviews for medical professionals.
> . A source of information on coding and treating a variety of illnesses.
>
>
> The objective of Dr. Jason's study was to evaluate the coverage of CFS in
> medical textbooks to determine the extent and comprehensiveness of CFS
> information.
>
> Textbooks were gathered from a number of sources including university
> medical school libraries and medical school book stores. The study looked
> at
> 129 textbooks in different specialty areas. The areas of interest in the
> study were the number of pages and percent of space allotted to CFS. Dr.
> Jason discussed pages in his presentation. The comprehensiveness and
> extent
> of representation of CFS information was included, and CFS was compared
> with
> to other illnesses.
>
>
> Page representation:
>
> . Looked at a total of 140,552 pages in 129 textbooks. Always took the
> most
> recent version of a textbook, primarily within the last seven or eight
> years.
> . CFS was represented on 125 pages, or .089 percent of the potential pages
> examined.
> . Holistic, psychiatry, and internal medicine texts had the highest
> percentage of mention of CFS; endocrinology, obstetrics, and emergency
> medicine the least.
>
>
> If CFS was mentioned, the study also examined information concerning:
> . The illness ideology.
> . The probability of Axis 1 disorder.
> . Treatment options.
> . Prevalence rate.
> . Inclusion of ME terminology.
>
> Results:
> . 53 textbooks (41 percent) of the 129 textbooks had some mention of CFS.
> The problem, of course, was that there was very little mention.
> . 42 textbooks (32 percent) had something about etiology. Sometimes it was
> biogenic, sometimes psychogenic, sometimes both.
> . 17 textbooks (13 percent) mentioned the high probability of Axis 1
> Disorder [a major psychiatric problem].
> . 25 textbooks (19 percent) mentioned some criteria.
> . 37 textbooks (28.7 percent) indicated some treatment associated with
> CFS.
> The most common were cognitive behavior therapy, anti-depressants, graded
> exercise or exercise, and supplements.
> . Only 18 textbooks (14 percent) had any mention of prevalence rates.
> . Only 19 books (14.8 percent) had any mention of ME terminology.
>
>
> Summarizing this part of the study: Critical domains within CFS are not
> well
> represented in medical textbooks, either in terms of etiology, criterion,
> or
> treatment options.
>
>
> Illness Comparison
>
> Next the study analyzed a random sample of 45 books from the 129 to
> compare
> CFS with illnesses that are much more prevalent-cancer and diabetes-and
> with
> illnesses that are less prevalent-MS [multiple sclerosis] and Lyme
> disease.
> Even the illnesses that are less prevalent than CFS have greater coverage
> in
> medical textbooks. CFS appeared in 24 percent of the 41,922 pages while
> Lyme
> disease appeared in 61.8 percent and MS, 53 percent.
>
> Major findings:
> . CFS is underrepresented in medical textbooks.
> . CFS is also given fewer pages than diseases that are less prevalent.
>
>
> Why does this matter?
> . 77 percent of CFS patients reported they had experienced a negative
> interaction with a healthcare provider.
> . 66 percent believe that their condition had been made worse after
> seeking
> care from their doctors.

> . Family physicians feel the continuing education and training they
> received
> leave them unable to diagnose and manage CFS.
> . 48 percent of general practitioners did not feel confident that they
> could
> diagnose CFS.
>
>
> Conclusions
>
> . Healthcare professionals need to be adequately trained and provided with
> up-to-date, non-biased information in their textbooks.
> . Medical textbooks may be a critical component in raising CFS awareness
> and
> there is a clear need for this illness to receive more representation.
>
>
>
>
>
>
>
>
>
> =========== As mentioned above, a sample medical textbook entry, this one
> jointly written by CFS "expert" Prof Peter White no less (not a
> recommendation from me) ===============
>
>
> Kumar and Clark - Clinical Medicine
>
> By Parveen Kumar, CBE, BSc, MD, FRCP, FRCP (Edin), Professor of
> Clinical Medical Education, Barts and The London, Queen Mary's School
> of Medicine and Dentistry, University of London, and Honorary
> Consultant Physician and Gastroenterologist, Barts and The London NHS
> Trust, London, UK; and Michael Clark, MD, FRCP, Honorary Senior
> Lecturer, Barts and The London, Queen Mary's School of Medicine and
> Denistry, University of London, UK
>
> ISBN 0702027634 . Paperback . 1528 Pages . 1283 Illustrations
> Saunders . Published August 2005
>
> ----------------
>
> Contributors include:
>
> ----------------
>
> Anthony W Clare MD FRCPI FRCP FRCPsych MPhil
> Professor of Clinical Psychiatry
> Trinity College, Dublin;
> Medical Director
> St Patrick's Hospital, Dublin, Ireland
>
> ---------------------------------
>
> Peter D White MD FRCP FRCPsych
> Senior Lecturer in Psychological Medicine, Honorary Consultant in
> Liaison Psychiatry
> Barts and The London, Queen Mary's School of Medicine and Dentistry,
> University of London, UK
>
> -----------------------------------
>
> <>
>
> We all have illness behaviour when we choose what to do about a
> symptom. Going to see a doctor is generally more likely with more
> severe and more numerous symptoms and greater distress. It is also
> more likely in introspective individuals who focus on their health.
>
> Abnormal illness behaviour occurs when there is a discrepancy between
> the objective somatic pathology present and the patient's response to
> it, in spite of adequate medical investigation arid explanation.
>
> FUNCTIONAL OR PSYCHOSOMATIC DISORDERS: MEDICALLY UNEXPLAINED SYMPTOMS
>
> `Functional' disorders are illnesses in which there is no obvious
> pathology or anatomical change in an organ (thus in contrast
> to `organic and there is a presumed dysfunction in an organ or
> system. The word psycho-somatic has had several meanings, including
> psychogenic, `all in the mind'; imaginary and malingering. The modern
> meaning is that psychosomatic disorders are syndromes of unknown
> aetiology in which both physical and psychological factors are likely
> to be causative, The psychiatric classification of these disorders
> would be somatoform disorders, but they do not fit easily within
> either medical or psychiatric classification systems, since they
> occupy the hinterland between them. Medically unexplained symptoms
> and syndromes are very common in both primary care and the general
> hospital (over half the outpatients in gastroenterology and neurology
> clinics have these syndromes). Because orthodox medicine has not been
> particularly effective in treating or understanding these disorders,
> many patients perceive their doctors as unsympathetic and seek out
> complementary treatments of uncertain efficacy. Examples of
> functional disorders are shown in Table 22.4.
>
> Because epidemiological studies suggest that having one of these
> syndromes significantly increases the risk of having another, some
> doctors believe that these syndromes represent different
> manifestations in time of `one functional syndrome', which is
> indicative of a somatization process. Functional disorders also have
> a significant association with psychiatric disorders, especially
> depressive and panic disorders as well as phobias. Against this view
> is the evidence that the majority of primary care patients with most
> of these disorders do not have either a psychiatric disorder or other
> functional disorders.
>
> Table 224
>
> Functional or psychosomatic syndromes (medically unexplained symptoms)
>
> `Tension' headaches
> Atypical facial pain
> Atypical chest pain
> Fibromyalgia (chronic
> widespread pain)
> Other chronic pain syndromes
> Chronic or post-viral fatigue syndrome
> Multiple chemical sensitMty
> Premenstrual syndrome
> Irritable or functional bowel syndrome
> Irritable bladder syndrome
>
> It also seems that it requires a major stress or a psychiatric
> disorder in order for such sufferers to attend their doctor for help,
> which might explain why doctors are so impressed with the
> associations with stress and psychiatric disorders. Doctors have
> historically tended to diagnose `stress' or `psychosomatic disorders'
> in patients with symptoms that they cannot explain. History is full
> of such disorders being reclassified as research clarifies the
> pathology. A recent example is writer's cramp (p. 1233) which most
> neurologists now agree is a dystonia rather than a neurosis.
>
> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
> Chronic fatigue syndrome (CFS)
> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
>
> There has probably been more controversy over the existence and
> aetiology of CFS than any other functional syndrome in recent years.
> This is reflected in its uncertain classification as neurasthenia in
> the psychiatric classification and myalgic encephalomyelitis (ME)
> under neurological disorders. There is good evidence for this
> syndrome, although the diagnosis is made clinically and by exclusion
> of other fatiguing disorders. Its prevalence is 0.5% in the UK,
> although abnormal fatigue as a symptom occurs in 10-20%. It occurs
> most commonly in women between the ages of 20 and 50 years old, The
> cardinal symptom is chronic fatigue made worse by minimal exertion.
> The fatigue is usually both physical and mental, with associated poor
> concentration, impaired registration of memory, irritability,
> alteration in sleep pattern (either insomnia or hypersomnia), and
> muscular pain. The name myalgic encephalomyelitis (ME) is
> decreasingly used within medicine because it implies a pathology for
> which there is no evidence.
>
> Aetiology
>
> Functional disorders often have aetiological factors in common with
> each other (see Table 22.5), as well as more specific aetiologies.
> For instance, CFS can be triggered by certain infections, such as
> infectious mononucleosis and viral hepatitis. About 10% of patients
> with infectious mononucleosis have CFS 6 months after the infectious
> onset, yet there is no evidence of persistent infection in these
> patients. Those fatigue states which clearly do follow on a viral
> infection can be classified as post-viral fatigue syndromes. Other
> aetiological factors include physical inactivity arid sleep
> difficulties. immune and endocrine abnormalities noted in CFS may be
> secondary to the inactivity or sleep disturbance commonly seen in
> patients. Mood disorders are present in a large minority of patients,
> and can cause problems in diagnosis because of the large overlap in
> symptoms. These mood disorders may be secondary, independent (co-
> morbid), or primary with a misdiagnosis of CFS. The role of stress is
> uncertain, with some indication that the influence of stress is
> mediated through consequent psychiatric disorders exacerbating
> fatigue, rather than any direct effect.
>
> Management
>
> The general principles of the management of functional disorders are
> given in Box 22.7. Specific management of CFS should include a
> mutually agreed and supervised programme of gradual increasing
> activity However, few patients regard themselves as cured after
> treatment. It is sometimes difficult to persuade a patient to accept
> what are inappropriately perceived as psychological therapies' for
> such a physically manifested condition. Antidepressants do not work
> in the absence of a mood disorder or insomnia.
>
> Prognosis
>
> This is poor without treatment, with less than 10% ot hospital
> attenders recovered after 1 year Outcome is worse with increasing
> age. co-morbid mood disorder, and the conviction that the illness is
> entirely physical.
>
> Table 22.5 Aetiological factors commonly seen in functional disorders
>
> Predisposing
>
> Perfectionist obsessional and introspective personality
> Childhood traumas (physical and sexual abuse)
> Similar illnesses in first-degree relatives
>
> Precipitating (triggering)
>
> Infections
> Chronic fatigue syndrome (CFS)
> irritable bowel syndrome (IBS)
> Psychologically traumatic events (especially accidents)
> Physical Injuries ('fibromyalgia and other chronic pain syndromes)
> Life events that precipitate changed behaviours (e.g. going off sick)
> Incidents where the patient believes others are responsible
>
> Perpetuating ( maintaining)
>
> Inactivity with consequent physiological adaptation (CFS
> and 'fibromyalgia').
> Avoidant behaviours - multiple chemical sensitivities (MCS) CFS
> Maladaptive illness beliefs (that maintain maladaptive behaviours)
> (CFS)
> Excessive dietary restrictions (`food allergies')
> Stimulant drugs
> Sleep disturbance
> Mood disorders.
> Somatization disorder
> Unresolved anger or guilt
> Unresolved compensation
>
> Box 22.7 Management of functional disorders
>
> The first principles is the identification and treatment of
> maintaining factors (e.g. dysfunctional beliefs and behaviours mood
> and sleep disorders)
>
> Communication
>
> Explanation of ill-health, including diagnosis and causes
> Education about management (including self-help leaflets) .
> Stopping drugs (e. g. caffeine causing insomnia, analgesics causing
> dependence)
>
> Rehabilitative therapies
>
> Cognitive behaviour therapy (to challenge unhelpful beliefs and
> change coping strategies)
> Supervised and graded exercise therapy for approximately 3 months (to
> reduce inactivity and improve fitness)
>
> Pharmacotherapies
>
> Specific antidepressants for mood disorders,analgesia and sleep
> disturbance .
> Symptomatic medicines (e.g. appropriate analgesia, taken only when
> necessary)
>

NIH Research statistics show fundamental inequality


Disease/Disorder......Funding........# Afflicted.....Research/Patient

Parkinson's...........$215,100,000...1,000,000.........$215.10

Alzheimer's..........$644,000,000...4,000,000.........$161.00

Multiple Sclerosis..$83,900,000......340,000.........$246.76

Cancer.............$5,558,800,000....8,544,000.........$650.61

Muscular Dystrophy.$25,400,000.....150,000........$169.33

Autism..................$70,500,000....1,000,000.........$70.50

Totals...............$6,597,700,000...15,034,000.......$438.85





And in last place by so many lengths we're not even in the same race, CFS, which in its best year got $12 per patient, and many years gets only $1 per patient.



CFS has many symptoms in common with MS, and has three times as many patients, so why do they get 100x as much research money per patient?



Certainly not because those diseases are worse. Nancy Klimas, M.D., at the 11/3/06 CDC Press Conference, said:
"there's evidence that the patients with this illness experience a level of disability that's equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis. And that has certainly given it a level of credibility that should be easily understood by people's friends and families, and certainly, by us, the health care providers."



Tuesday, December 30, 2008

TIGHT DEADLINE - Tell your story to Obama

In a message dated 12/30/2008 9:22:29 A.M. Pacific Standard Time, dividedwefail@aarp.org writes:
It's not every day the next president of the United States asks YOU for advice. But that's what's going on right now. President-elect Obama has sent his pick for Secretary of Health and Human Services, Sen. Tom Daschle, on a mission to find out how Americans feel about health care reform. They want your input. Will you take them up on it? Tell the incoming Obama administration why we cannot wait to fix health care -- and we'll share your responses with Sen. Daschle and Obama's transition team. The economic crisis is forcing the incoming administration to put some of Obama's campaign priorities on the backburner. We cannot let this happen to health care reform. Obama's transition team needs to hear from you that fixing health care is a crucial part to addressing millions of Americans' economic hardships. It's personal feedback from people like you that can help turn something like health care reform from a campaign platform to a political reality. Share your thoughts on health care with the incoming administration -- and make sure health care stays at the top of President-elect Obama's agenda. After you take action, please forward this email along to your friends and family. The more voices we bring to the table, the more likely both parties will work together to get this done. Sincerely,The Divided We Fail Team

Re: Well, since you asked...

FYI, a group of CFS activists (you'd probably recognize some of the names) *are* working on a formal report, in response to a call for "living room focus groups", the gist of which is "universal health insurance is great, but it doesn't help when your doctor doesn't know diddly-squat about what you have", and once we've got their attention on that, getting down to specifics about CFS.
However, just because we are putting together a formal report, don't let that stop you from writing a little something to tell your own story. It's commonly accepted that each letter received represents 10,000 people who didn't take the time to write, so even if all you can manage is two sentences about "my doctor's ignorance about CFS made me worse" or "my doctor knows less than I do", PLEASE e-mail them. It's really really important to get CFS on their radar.
You tell the heartrending personal stories, and we'll take care of the big picture and the CFSAC recommendations.



Scholarships for PWDs and/or Family members

Education Monies for PWDs:
Ethel Louise Armstrong Foundation Scholarship
Vocational Rehabilitation

Also, for family members:

From: Scholarships at TLG [mailto:scholarships@lookingglass.org]
Sent: Thursday, December 18, 2008 12:21 PM
Subject: 2009 College Scholarships for Students with Parents with Disabilities

Please post and distribute widely.

2009 College Scholarships for Students with
Parents with Disabilities Announcement

All application materials must be completed and postmarked by Monday
March 16, 2009.

Through the Looking Glass and its National Center for Parents with
Disabilities and their Families are pleased to announce new
scholarships specifically for high school seniors and college
students who have parents with disabilities.  These scholarships are
part of Through the Looking Glass' new federal grant  (New National
Center for Parents with Disabilities and their Families). Please note
that these are new awards and have different application procedures
than in the past.  There are t wo separate scholarship awards, and
each has separate eligibility requirements:

1. High School Seniors.  To be eligible, a student must be a high
school graduate (or graduating senior) by Summer 2009, planning to
attend college in Fall 2009 and have at least one parent with a
disability. Five separate $1000 awards will be given out in Fall
2009. Individuals may submit only one application per award period.

2. College Students. To be eligible, a student must be currently
enrolled in a college or university, be 21 years of age or younger as
of  March 16, 2009, and have at least one parent with a disability.
Five separate $1000 awards will be given out in Fall 2009.
Individuals may submit only one application per award period.

Selection criteria for all scholarships include academic performance,
community activities and service, letters of recommendation and an
essay describing the experience of growing up with a parent with a disability.

These Scholarships are also part of a research study on young adult
children of parents with disabilities.  As explained in the Consent
Form in the Application, you may be willing to participate in an
optional survey about young adult children of parents with
disabilities.  The additional information you submit on this survey
will not affect your scholarship chances and will not be disclosed to
anyone outside the project researchers; all identifying information
will be removed.  If you consent to participate in this optional
survey, we will email you the survey after we have received your
completed application.


Thanks,
Scholarships Coordinator
Through the Looking Glass
The National Center for Parents with Disabilities and their Families
2198 Sixth Street, Suite 100
Berkeley, CA 94710
(800) 644-2666 (voice)
(800) 804-1616 (TDD/TTY)
FAX: (510) 848-4445
Website: http://www.lookingglass.org/



Monday, December 29, 2008

Cheney to speak in DC Area

Paul Cheney, MD, PhD, will speak from 6 to 9 pm on Saturday, April 25th at the Fairfax Board Auditorium of the Government Center in Fairfax, VA (just outside Washington, DC, east of Dulles Airport).

His three-hour presentation to the International IFM (Institute of Functional Medicine) conference in May of this year received a five-minute standing ovation, and he has made several conceptual and treatment breakthroughs since then, so this April seminar should be an exciting, groundbreaking event.

Title: Chronic Fatigue Syndrome: Is Oxygen the Problem and Why? A Four-Part Treatment Protocol

In addition to presenting a broad overview of CFS (important principles, case definition, clinical findings, objective data, key medical literature), Dr. Cheney will present information on his latest four-part treatment protocol. His presentation will include in depth information on the following two topics:
Oxygen Toxicity as a Controlling Factor in CFS
This section of the presentation will focus on the research finding of nearly 100% toxicity in CFS patients when oxygen is administered. (96% @ 4 lpm nasal cannula and 100% at 40% mask.) Dr. Cheney will present evidence that patients categorized according to increasingly powerful treatment protocols were transformed to an increasingly oxygen tolerant state. The most powerful treatment protocol was also associated with significant overall clinical improvement (p<0.006). The conclusion: CFS is an oxygen toxic state and oxygen toxicity status appears to determine outcome in therapeutic trials. Therefore, oxygen toxicity is a locus of control in this illness. These findings appear to force a narrowing of potential causes of CFS because whatever pathophysiology one puts forth must explain universal oxygen toxicity in CFS. Dr. Cheney will also present recent evidence of the likely cause of this oxygen toxicity.

Cell Associated Therapy for Chronic Fatigue Syndrome: Is this the Next Frontier?
Dr. Cheney will discuss the use of low molecular weight (LMW), mammalian tissue derived peptides as therapeutic agents when applied to the skin using novel transdermal gels. These LMW peptides are known to control gene expression and can shift organ function toward normal. Data will be presented from a one-year prospective trial in CFS using these LMW peptides which produced significant improvement in function (KPS>10, p<0.006, N=18). Therapy with LMW peptides from cell associated, mammalian tissue homogenates appear to offer a significant benefit in CFS, especially where it counts the most, namely, the functioning of the patient.

This event is being co-sponsored by the Northern Virginia CFS/ME, FMS, OI Support Group and the CFS/FM Support Group of Dallas - Fort Worth.

A 2-disc DVD master will be produced by a firm in Washington, and orders will be taken, duplicated and mailed out by a DVD fulfillment company in New York. DVDs will be available in both NTSC and PAL formats, making them compatible with DVD players around the world. No pre-orders will be taken. Ordering information will be posted as soon as it is available, which will be some time after the seminar.