Saturday, October 25, 2008

FUNDRAISING IDEAS

May be reposted

I think a lot of PWME feel guilty about raising money for ME biomedical
research themselves as at first it sounds rather selfish like asking for
something for yourself.   I know I felt like this for ages until I
realised that the general public were not going to do it as ME has had
such a bad press and is not a popular cause.

So if we and our friends and families don't try to raise funds for
biomedical research into ME, certainly no-one else will, and when you
think of all the youngsters with ME who are missing out on so much it is
incumbent on us who do know the reality of ME  to raise awareness and do
our best to raise funds or encourage those close to us to do so.

You can find lots of fundraising ideas here for both PWME and for their
healthy friends and family:
http://www.mechat.co.uk/funds/Fundraising.htm
Von x

Please don't forget to search the net via
http://www.everyclick.com/uk/meresearchuk/
and raise money for ME biomedical research just by clicking






 



Friday, October 24, 2008

Joe Davidson - A Notable Absence at Hearing

 
"Given their numbers in the general population, Hispanics and the disabled are less represented in the federal workplace than other groups, according to the EEOC."
 
That's right ... on the one hand, you have Federally-appointed SSDI judges insisting that the disabled should be employed instead of collecting benefits, and on the other hand, you have the Federal Government hiring fewer disabled than their proportion in the population.
 
Since private employers will always point to the cost of accommodations required by the disabled, the fact that some cannot achieve full productivity, it would seem that the government (which is not required to produce a profit for stockholders) should be the ones leading the way in hiring the disabled.  After all, it's the government that saves money when the disabled move from benefits to work, and the government that reaps the extra income when the disabled become taxpayers, it should be the government that makes sure that as many as possible do find employment.
 
The judge has repeatedly told me that I should be working, but has offered no assistance in finding that one generous employer who will hire me despite my disabilities.  VocRehab says they cannot place me, because I'm too disabled, yet the judge continues to deem me "not disabled enough" to deserve disability benefits.
 
And the simple fact is, that when you get into the private sector, every employer believes the disabled should be working, but that it's their chief competitor who should be incurring the costs of hiring the disabled, because they themselves don't want the extra expense.
 
Most of the disabled really would rather be employed, if someone would hire them.  Most of us were employed, right up until our employers deemed us too disabled to deserve our paychecks.



 



Neighbors

What percentage of your neighbors do you know by name?
10% or less 40%
Maybe 25% 17%
About half, 50% 14%
Almost all of them, about 75% 15%
All of them -- 100% 7%
None of them 6%
I don't have any neighbors 1%
 


These numbers really don't surprise me.
 
In her book "Encounters with the Invisible", Dorothy Wall observes "In that odd way of urban life, where a street can be an invisible barrier, she and I have barely exchanged a few words, though we've lived across from each other for almost fifteen years."
 
And this is, in fact, a big problem for a lot of CFS patients.  People are more transient than they used to be, so you don't know your neighbors as well as when you (and they) have lived your whole lives in the same town.  They don't care about you, they don't even really know you.  In a metropolitan area of 1,500,000 people, I know fewer people by name than I did in a high school of 1500.
 
I've moved around California quite a bit in 3 decades of living here, and there were many neighborhoods where the neighbors were completely anti-social; I'd say "hello" and they'd pretend not to even see me – all I'd said was hello, nothing potentially offensive, nothing to make them think I was a crazy person or a moocher to be avoided.  I lived in one apartment complex for 3 years, and (other than the manager) knew only one other tenant by name; she was not a native Californian, and acted like she was still in her small Southern town where everyone talked to everyone.  I lived in another complex for almost 5 years and never even saw the tenant on the other side of the patio fence – as soon as she heard me come out onto my patio, she would go back inside and close the door, she was that fanatic about maintaining her privacy by hiding from the neighbors.
 
In the last apartment building I lived in, I finally got the explanation for this behavior: I was seen talking to a lonely old widow and was warned "don't talk to her, she's a terrible gossip".  Apparently, what they meant was that she asked "what's your name and what do you do for work?", which they considered prying.  In all the years that we've talked, the only time she's said anything about anyone other than her, me, and a medical update on her son, was to one day tell me that while I was at work, the ambulance came to take away the woman across the hall from me; neither of us knew the woman's name, she didn't know what was wrong with the woman, just an observation that I'd missed some excitement, and a request that if I saw the woman had come home from the hospital, to let her know so she could deliver some tea and sympathy.
 
Hardly what I consider to be "gossiping", but people nowadays are much more private than they were when I was growing up and you knew everything about everyone on your block.  Now, they'd be perfectly happy for no one to even know their name.
 
The only reason I know the names of the people on my block, after 11 years of living here, is that shortly after she moved in, one neighbor organized a progressive Christmas party.  We were all curious to see how the other houses had been remodeled, but once we'd satisfied our curiosity, no one was interested in doing it again the next Christmas.  That is, in fact, the only time most of us have been in any of the neighbors' houses.
 
The only one of my neighbors who even realizes that I'm sick doesn't care enough to get the name of the ailment right.  She remembers something about a C and an S and keeps thinking that it's Carpal Tunnel Syndrome.  So, needless to say, there's no help for me from the neighbors; I'm left to fend for myself.
 
If it happens to you, too, don't blame yourself.  Blame the current state of society, where everyone is too wrapped up in themselves to care about the neighbors.
 
 
 





Another Day in the Life

One of the symptoms that's not conveyed by the name Chronic Fatigue Syndrome is the tendency to light-headedness or dizziness.  It may have something to do with the tendency of many PWCs (People With CFS) to have low blood pressure (mine was just-barely normal even when I was healthy), or it may have something to do with the viral heart damage noted by Natelson and Lerner, or both.
 
As to the Natelson research, in an article on the DFWCFIDS site Dr. Cheney stated, "This is the best, most important publication in 20 years. ... What this very impressive article says is that, without exception, every disabled CFS patient is in heart failure." "There are two kinds of heart failure. There's the kind that any cardiologist can diagnose in about a minute. That you do NOT have. Which is why cardiologists missed this. What you have is Compensated Idiopathic Cardiomyopathy." 
 
Cheney points out that it's missed because most cardiac tests are done lying down.
 
"Now, do CFIDS patients prefer to stand up or lie down? Of course, they prefer to lie down. Do you know why? "Do you know what your cardiac output does when you stand up? It drops 30%. In all humans, without exception. So very critical to this technology is that it's the only one that could be done upright [again, four positions on the tilt table are best; standing up and laying down at a minimum]. And what they found is absolutely astonishing, truly astonishing. When [disabled CFIDS patients] stand up, [they're] on the edge of organ failure due to low cardiac output."" 
 
"Now, when your Q drops 30%, your pressure will not drop, because your body will defend that pressure, even to the loss of your brain. This is critical to understanding what happens in CFIDS patients."
 
"How do you augment preload–which is blood volume–to improve cardiac output? You lie down. When you lie down, you increase the cardiac output a whopping 2 liters per minute. Don't sit, don't recline–lie down. Some patients need to lie down and augment volume anytime, all the time."
 
Before the Natelson research came out, I had already figured out for myself that on some days, I could not work sitting up, but I could work lying down.  This was not a hypochondriac reaction to reading the article, the article simply provided the whys and wherefores of what I'd already noted myself, and made me feel less like "something weird going on", because now there was a valid medical explanation for what was happening.
 
For some reason, I'm in one of those phases again.  For the past 24 hours, I got light-headed as soon as I sat up.  Problem, I had a huge work assignment that I needed to get done ASAP.  I had no choice, I had to work on it lying down, because if I tried to sit up, I simply couldn't think.
 
Now, there are a lot of reasons people feel faint.  They could have a fever (my temperature today was 97.0, so that's not it).  They could be dehydrated (I've been pushing Gatorade for 24 hours, so that's not it).  They could be hypoglycemic (I even tried swallowing a teaspoon of sugar with no change in how I felt).  They could be hungry (I'd just eaten a good lunch).
 
In fact, that good lunch may be the reason I felt the way I did – I'd already been out twice this week, and lunch yesterday was the third time.  The Sunday outing was only about 15 minutes, so I didn't think that counted, but apparently it was enough to push me over the limit, and now I'm paying the price. 
 
Since I was light-headed within 5 minutes of sitting up first thing this morning, I spent almost all of today lying down, so I wouldn't fall down, and, as often happens when I lay down, fell asleep for a lot of the day.  Which was not accomplishing the things on my to-do list, but hopefully was doing some healing so that I can get to my list tomorrow.  Here we are after dinner time, and finally I was sitting up about half an hour before I started to feel light-headed, which is a definite improvement over where I was 24 hours ago, even though it is still definitely not "normal".
 
This is one reason why I cannot return to a "real job": I often cannot function if I have to sit up, and employers are not going to replace my desk with a couch so that I can work lying down.  It just sends the wrong signal to the other employees (and clients) to have someone lying down on the job, even if that's the only way that person can do the job.  And it was that request for accommodation that led to the lawyer advising me that the accommodations I needed were in excess of what ADA required him to provide; he told me what to read in order to see for myself that I did not qualify for ADA accommodations, but did qualify for disability benefits (which I still haven't been approved for, because the judge thinks I should be able to demand more than ADA says I'm entitled to).
 
Several years ago, one of my dear friends was trying to figure out a way to get me out more, and offered to buy me an electric scooter.  Aside from the fact that I would have to lift it in and out of the basement whenever I want to use it, the dizzy spells were just as much reason for me to not go out much.  I'd still have to navigate a flight of stairs, which isn't safe when you're on the verge of passing out, and I'd have to sit up on the scooter, which isn't easy when you're light-headed.  She proposed solutions to the scooter storage issue, but there was simply no getting around the main problem, that at that point I was either horizontal or I was light-headed, and sitting on the scooter when I was light-headed was more risky than staying home and lying down.
 
There's more to CFS than mere "fatigue".  If you think it's just a matter of "tired all the time", think again.  There are many other problems caused by central nervous system dysfunction.
 




 



Is fibromyalgia a neurological disease?

 
[Is fibromyalgia a neurological disease?]
[Article in Spanish]

Neurologia. 2008 Nov;23(9):593-601.

Arias M.

Servicio de NeurologĂ­a. Complejo Hospitalario Universitario. de
Santiago de Compostela. La Coruna.

PMID: 18925441


The key feature of fibromyalgia is a chronic pain picture located in
different structures of the musculoskeletal system, but without any
evidence of disease in them. Besides pain, patients with fibromyalgia
often describe tiredness, sleep disorders, headache, and emotional
problems, as well as many other psychosomatic complaints.

Genetic and environmental factors have been implied in the
pathogenesis of fibromyalgia, its perpetuation being explained by an
alteration of the nociceptive system, thus leading to a
neuroendocrine syndrome of chronic stress. Although research has
provided a significant amount of data, there is no definite biomarker
for fibromyalgia so far. The disease can appear alone or associated,
among other diseases, with rheumatoid arthritis, erythematous
systemic lupus, myopathies and multiple sclerosis.

Fibromyalgia generally has very important repercussions on family,
social and professional life of the patient, especially considering
that therapeutics (aerobic exercise, antidepressants and
antiepileptic drugs) have hardly shown any effectiveness.
However,
achieving a precise diagnosis, being able to transmit it to patients
in a realistic way, along with attaining an optimally personalized
treatment, are of primary importance, among other things, in order to
reduce possible iatrogenesis
caused from an individual viewpoint in a
problem with multiple aspects.


Key words: Fibromyalgia. Chronic pain. Nociceptive system. NeurologĂ­a
2008;23(9):593-601.
 
* * *
One local pain management specialist thinks fibromyalgia is often iatrogenic (doctor-caused).  It's known that there are structural changes to the central nervous system after just 48 hours of untreated pain, and many doctors tell patients to try to tough out the pain before anything will be prescribed for it.  Years after I reported that Advil was doing absolutely nothing to help my pain, that was still all the doctors wanted to recommend for it. 
 
At the beginning of one memorable appointment, I told the doctor that the Advil was giving me an ulcer, and was told to stop taking it; at the end of the appointment, I reminded the doctor that I needed a prescription for the pain, and he threw over his shoulder "take Advil" as he scurried from the room before I could remind him that 5 minutes earlier he'd told me to stop taking it because of the ulcer!
 

 
 
 
 
 



YouTube Channel for ME/CFS Issues

May be reposted

I have finally got around to setting up a You Tube Channel called
"action4change 4me" in which I will be examining ME and "CFS" issues as well
as ME charity issues and matters concerning the charity and voluntary
sector.

I have placed one video on the site, and there will be more to follow - the
next one is only a few days away.

My Channel can be found at :-

http://uk.youtube.com/user/action4change4me

Ciaran Farrell






Goudsmit: Fatigue in Myalgic Encephalomyelitis

Fatigue in Myalgic Encephalomyelitis
Ellen M Goudsmit1*, Bart Stouten2, Sandra Howes3
1 Health Psychologist, 23 Melbourne Road, Teddington, Middlesex, TW11 9QX, UK
2 Co-editor, ME and CFS References
3 Co-editor, ME and CFS References.
* Corresponding author.
Email: EMG: ellengoudsmit@hotmail.com
        
Abstract

Background: The objectives of this study were to measure fatigue in patients with well-defined Myalgic Encephalomyelitis (ME) and to assess if  there are any problems associated with the Chalder Fatigue Scale, which has been widely used to assess fatigue in patients with chronic fatigue syndrome (CFS).

Methods: Twenty-six patients were recruited from a local support group. All had been diagnosed by physicians and met research criteria for ME. They completed  the 11-item Chalder Fatigue Scale and were also asked to rate the severity of their illness. The fatigue scores were calculated using both the Likert method (0,1,2,3) and the bimodal method (0,0,1,1,).

Results: The mean Likert score was 26.65 (SD 5.36) and the mean bimodal score was 9.81 (SD 2.04).  Fifty per cent of the patients recorded the maximum score using the bimodal method and 77% recorded the two highest scores. Moreover, there was a marked overlap between those who rated themselves as moderately or severely ill. These findings are indications of a low ceiling.

Conclusions: The findings from this study using the Chalder Fatigue Scale show that the low ceiling associated with the bimodal method means that this scoring system is not suitable for use in clinical trials.  Researchers may wish to consider alternative instruments to obtain a more accurate measure of fatigue in patients with moderate to severe ME and similar conditions.  


 
Fatigue in Myalgic Encephalomyelitis  

Myalgic encephalomyelitis (ME) has been described in the medical literature since the nineteen thirties (1). It is characterised by marked fatiguability following minimal exertion, plus a delayed recovery in muscle strength after exertion ends (2, 3). Additional symptoms include myalgia,  poor concentration and memory,  giddiness or vertigo, sleep disorders, visual disturbances, mood swings, thermoregulatory abnormalities, and intolerance to alcohol.  However, it is the emphasis on muscle fatigue and the prolonged recovery period, plus the marked diurnal variability of the symptoms,  which differentiate ME from other chronic fatigue syndromes (CFS) and disorders such as depression (4).  

The aetiology of ME is unclear but some cases are associated with enteroviral infection (5-7), and abnormalities have been found in both muscle (7-8) and brain (9).  Although it has been recognised since 1956 and included in the WHO International Classification of Diseases since 1969, there has been little research into ME since the introduction of the concept of  CFS in 1988  (10-12). This effectively diverted attention away from post-viral syndromes and towards a much larger and  more heterogeneous  population, dominated by patients reporting generalised fatigue and pain (11,13).  

As the problems associated with the heterogeneity were recognised, the International Study Group advising the Centers for Disease Control and Prevention (CDC) recommended  that researchers employ stratification strategies that might reveal reliable subtypes (4, 10-11). It was hoped that the study of such groups would provide greater diagnostic clarity and, accordingly, facilitate the identification of  the  pathophysiological mechanisms underlying the onset and perpetuation of symptoms.   It is largely due to this change in focus that  there has been a resurgence of  interest  in  post-infectious fatigue syndromes and other conditions resembling ME (14-17). However, while it may seem logical to research subtypes that have already been recognised and defined, the fact that most doctors no longer diagnose ME means that there are relatively few such patients available for study. The following project was possible because two of the authors live in an area where several physicians have a special interest in the illness, and we therefore had access to a small but well-defined sample.

The Chalder Fatigue Scale is one of the most widely used measures in research into chronic fatigue and CFS but it has not yet been evaluated in people with ME (18-22). The objectives of this study were firstly to measure fatigue in patients with well-defined ME, and  secondly, to assess if  there are any problems associated with this instrument.

Methods

The participants were recruited from a local patient support group in South London and Surrey through a notice in their newsletter and through the practice of one of the authors (EG). None were paid for their participation. All had been diagnosed by physicians and met  the criteria  below. The inclusion criteria were devised by Goudsmit  and are based on the definition of ME formulated  by Ramsay (2).  Co-morbid conditions were not excluded if they were relatively minor and clearly separable from the ME.

Inclusion criteria:
1. Abnormal levels of fatigue and/or muscle weakness, precipitated by relatively minor levels of activity. Symptoms typically worsen during the next 24-48 hours.
2. The presence of other symptoms involving the brain and central nervous system (e.g. impaired memory and concentration, disturbed sleep patterns, balance problems and tinnitus.)
3. Periods of impaired circulation (e.g. facial pallor, feeling cold when it's hot outside, or the reverse).
4. Marked fluctuation of symptoms, from hour to hour and day to day.
5. These symptoms must have been present during the past six months.

Exclusion criteria:
1. The presence of any condition which can  fully explain or which is likely to contribute  markedly to the degree of fatigue experienced.
2. Any person not diagnosed by a physician.

Measures

The Fatigue Scale  devised by Chalder et al (1993) is a short, self-report  measure of the severity of  tiredness (18).  It produces a total score, with subscores  reflecting  mental fatigue (4 items), and  physical fatigue (7 items).  The 11 items are rated on a four-option continuum, from 'better than usual', to 'much worse than usual'. The responses are either assigned scores from 0 to 3 (Likert method) giving a maximum of 33, or  0, 0, 1, 1 (bimodal method), giving a maximum of 11. In this study, Cronbach's alpha was .90 using the Likert method and .83 using the bimodal method.

Other questions were included to collect demographic data and information about the duration  of the illness and  the presence of co-morbid disorders.  The patients were also asked if they experienced the symptoms listed in the inclusion criteria and to rate the severity of their illness at the time of the study. 'Mild' was defined as being able to lead a reasonably normal life, 'moderate' was defined as not being able to work, and being able to do less than 50% of what the person could do before they became ill. 'Severe' was defined as being able to do less than 25% of what the patient could do before they became ill, and being dependent on other people for activities such as cooking and shopping.

Statistics

The data from the Fatigue scale were analyzed using both the scoring methods described above. The relationship between fatigue and other selected variables were examined using Spearman's correlation coefficient. Alpha was set at .05 and all tests were two-tailed.

Results

All the 26 patients who agreed to participate returned the questionnaire. The mean age of the sample was 43.77 years (SD 10.79) and 69% were female. They had been ill for an average of 155.88 months (SD 115.76), range 18-420 months, three categorized their condition as mild, 12 regarded themselves as moderately ill and the remaining 11 rated their condition as severe. Nine reported the presence of  co-morbid disorders such as  back pain and rheumatoid arthritis, or were taking a form of  medication which could theoretically have added to their fatigue.  To assess the influence of these confounding variables, the sample was divided into two groups: one with ME only and the other with ME and additional health problems ('ME-plus').

As Table 1 shows, the ME group was slightly older than the ME plus group but had been ill for a shorter time. Forty-seven per cent were male, compared to the  ME plus group which was made up entirely of  women.  In the ME group,  two  (12%) people categorised their illness as mild, eight (47%) as moderate and seven (41%) as severe. In the ME plus group, one (11.1%) described their illness as mild,  four (44.4%)  rated themselves as moderately  ill and a further four rated themselves as severely ill. 

The mean Likert fatigue score for the combined sample was 26.65 (SD 5.36) and the mean bimodal score was 9.81 (SD 2.04).  There were only minimal differences between the ME and the ME-plus groups in the fatigue scores, irrespective of how they were calculated.

Focusing on the individual items revealed that 86.8% of the questions making up the physical fatigue subscale received near maximal or maximum scores. The items which received the greatest number of low scores were question 3 ('do you feel sleepy or drowsy') and question 4 ('do you have problems starting things'). On the mental fatigue subscale, 93% of the items received near maximal scores.

Given there were no notable differences between the two ME groups, the relationship between fatigue and other variables were calculated for the sample as a whole. The Spearman's correlation coefficients showed no significant association between fatigue and either age or duration of illness.

Table 2 shows the mean fatigue scores and Figure 1 shows the individual fatigue scores for each of the three categories of illness severity. Four (15.4%) of the participants, all of whom rated their illness as severe, recorded the highest possible score using the Likert method and 13 (50%) recorded the maximum score using the bimodal method. Moreover, there was a marked degree of overlap between the scores from the moderately and severely ill, consistent with the view that this measure has a low ceiling.

The low ceiling is also evident in the distribution of the individual fatigue scores. As most of the scores of the moderately and severely affected patients lie close to  the maximum value, the distribution is highly skewed. This effect is more pronounced for the bimodal method than for the Likert method. Of  particular interest is the distribution of scores from the moderately affected participants.  All except one of the scores computed using the bimodal method lie in a cluster around the maximum, suggesting that this group is experiencing extreme fatigue. The Likert scores for this group, however, are not so close  to the maximum, suggesting a less disabling level of fatigue. As the questions are identical, the different interpretations appear to be artifacts  directly related to the scoring methods.

Discussion

This exploratory study found that patients with ME recorded comparatively high scores on the Chalder Fatigue Scale. To compare the fatigue scores with other samples, we searched for all studies on CFS that had used the 11-item Chalder Fatigue Scale.  The mean values reported in the identified articles  ranged from 17 (19) and 28.24  (20) using the Likert method (n=25) and from 6.89 (21) to 10.6  (22) using the Bimodal method (n=12).  Thus the fatigue levels found in our ME sample are similar to the higher values documented in the patients with CFS.

Although our sample was small and the findings should be interpreted with caution, the results are consistent with the anecdotal reports of profound, disabling fatigue as well as the raised scores on measures of  physical and functional impairment in the literature (3, 23).

Like previous reports on patients with CFS, our scores also revealed a low ceiling effect (24, 25).    Using the bimodal method, 50% of the participants recorded the highest score and 77% recording the two highest scores. This may present a problem in clinical trials, since those with a maximum score at baseline will not be able to record an increase in fatigue during or following treatment. There was also evidence of a ceiling effect when studying the Likert scores from the severely ill participants. Aside from the difficulties in obtaining an accurate measure of exacerbations, the clustering of scores also suggest that this measure may not be sensitive enough to reflect minor improvements.

A more detailed analysis revealed that 86.8% of the items on the physical fatigue subscale received near maximal scores using both Likert and bimodal methods. The questions which received the highest scores were item 5 ('do you lack energy') and item 7 ('do you feel weak').  The latter is particularly noteworthy as muscle fatiguability is a cardinal symptom of ME. The two questions which attracted the lowest scores and which were responsible for most of the variance  were 'do you feel sleepy or drowsy' and 'do you have problems starting things'. These findings are similar to those of Morriss et al (1998) whose subjects recorded maximal scores on six of the eight physical fatigue items, although in their study, most of the variance was accounted for by the items relating to mental fatigue (24).  

Comparing the means of the patients with ME with those documented in people with other fatigue syndromes supports the view that this subgroup cannot be differentiated from patients with CFS using this particular instrument  (20, 26-28). However, while the mean  for ME was similar to  the scores from  patients who fulfilled the 1994 criteria for CFS, it was higher than those from people with chronic fatigue and infectious mononucleosis (29, 30).  

A study by Jason et al (2003) also failed to differentiate individuals with ME and CFS using the Chalder Fatigue Scale (15). However, they found that a greater percentage of  the patients with ME reported post-exertional malaise, problems with concentration and memory, lymph node pain, early morning stiffness  and dizziness than the group with CFS.  

The nature of the neurological and neuropsychiatric symptoms associated with ME highlights the need to include these as variables in clinical trials and to address them  in rehabilitation programmes. The current  tendency to focus on fatigue and emotional distress may not give an accurate view of the effect of treatments in this subgroup, and interventions which do not recognise the diversity of  symptoms are less likely to meet these patients' needs (22, 31-32).    

The main limitation of this study was the small sample size. However, ME is a difficult disease to study. It is much less common than CFS as currently defined  - 1 per 1000 versus 10-26 per 1000 in the UK, respectively (13, 33), and there are therefore fewer patients available for research. In addition, there are currently no international consensus criteria for ME, and there has been little discussion in countries outside the US about the potential value of studying subgroups. This has limited  both interest and access to funding.  Another issue is that many of the participants were recruited from support groups, and although they closely resembled samples described elsewhere, the results may not be  applicable to patients in the community (3, 5, 9, 33).

Despite the diagnostic and practical challenges associated with the study of ME,  it is important that we do not use these as reasons to stop the research. Indeed, based on our findings, we would encourage further studies into  fatigue syndromes using  the stratification strategies recommended by the CDC (4).  Knowledge of the similarities and differences is essential not only to increase our understanding of the different diagnostic subgroups, but also a pre-requisite to improve patient care. 

In summary, the patients with ME were found to have fatigue scores comparable to those documented in people with CFS.  The ceiling effect associated with the Chalder Fatigue Scale means that the bimodal method is not appropriate for use in clinical trials, and that more accurate data may be obtained using a different measure.  

Authors' contributions

EMG designed the study, collected the data and drafted the manuscript. BS performed the statistical analysis and helped to draft the manuscript. SH participated in the design and helped to draft the manuscript. All authors read and approved the final manuscript.

Acknowledgements

The authors wish to thank Professor Trudie Chalder and all the individuals who participated in this study.

References

1. Gilliam AG:  Epidemiological study of an epidemic, diagnosed as poliomyelitis, occurring among the personnel of the Los Angeles County General Hospital during the Summer of 1934.  Public Health Bulletin, US Treasury Dept. No. 240.  Washington: United States Government Printing Office; 1938.
2.  Ramsay A: Myalgic Encephalomyelitis and Postviral Fatigue States. 2nd edition. London: Gower Medical Publishing; 1988.
3.  Goudsmit EM: The psychological aspects and management of chronic fatigue syndrome. PhD Thesis.  Brunel University, Department of Psychology; 1996.
4. Fukuda K, Straus SE, Hickie I., Sharpe MC, Dobbins JG, Komaroff A, the International Chronic Fatigue Syndrome Study Group:  The chronic fatigue syndrome: a comprehensive approach to its definition and study.  Ann Intern Med  1994, 121:95.
5.  Innes SBG:  Encephalomyelitis resembling benign myalgic encephalomyelitis.  Lancet  1970, 1:969 971.
6.  Lane RJM, Soteriou BA, Zhang H, Archard LC: Enterovirus related metabolic myopathy: a postviral fatigue syndrome. J Neurol Neurosurg Psychiatry  2003, 74:1382-1386.
7.  McGarry F, Gow J, Behan PO:  Enterovirus in the chronic fatigue syndrome.  Ann Intern Med 1994, 120:972-973.
8.  Behan WMH, More IAR,  Behan PO:  Mitochondrial abnormalities in the postviral fatigue syndrome.  Acta Neuropathol  1991, 83:61-65.
9.  Costa DC, Tannock C, Brostoff J:  Brainstem perfusion is impaired in patients with chronic fatigue syndrome. QJM  1995, 88:767-773.
10. Fukuda K: Development of the 1994 chronic fatigue syndrome case definition and clinical evaluation guidelines. In Chronic Fatigue Syndrome. Edited by Yehuda A and  Mostofsky DI.   New York: Plenum Press; 1997:29-50.
11. Jason LA, Corradi K, Torres-Harding S, Taylor RR, King C:  Chronic fatigue syndrome: the need for subtypes. Neuropsychol Rev 2005, 15:29-58.
12. Kennedy G, Abbot NC, Spence V, Underwood C, Belch, JJF:  The specificity of the CDC-1994 criteria for chronic fatigue syndrome: comparison of health status in three groups of patients who fulfil the criteria. Ann Epidemiol  2004, 14:95-100.
13. Wessely  S,  Chalder T, Hirsch S, Wallace P, Wright, D:  The prevalence and morbidity of chronic fatigue and chronic fatigue syndrome: a prospective primary care study.  Am J Pub Health 1997,  87: 449-1455.
14. Cameron B, Bharadwaj M, Burrows J, Fazou C, Wakefield D, Hickie I, Ffrench R, Khanna, R, Lloyd A., for the Dubbo Infection Outcomes Study:  Prolonged illness after infectious mononucleosis is associated with altered immunity but not with increased viral load. J Inf Dis  2006, 193:664-671.
15. Jason LA, Helgerson J, Torres-Harding SR, Carrico AW, Taylor RR:  Variability in diagnostic criteria for chronic fatigue syndrome may result in substantial differences in patterns of symptoms and disability. Eval Health Prof  2003, 26: 3-22.

16. Kerr JR,  Tyrrell DAJ:  Cytokines in parvovirus b19 infection as an aid to understanding chronic fatigue syndrome. Curr  Pain  Head Rep 2003,  7:333-341.
17. Vernon SD, Whistler T, Cameron, B, Hickie IB, Reeves WC, Lloyd A:  Preliminary evidence of mitochondrial dysfunction associated with post-infective fatigue after acute infection with Epstein Barr Virus. BMC Infect Dis 2006,  6:15.
18. Chalder T, Berelowitz G, Pawlikowska T, Watts L, Wessely S, Wright D, Wallace EP:  Development of a Fatigue Scale. J Psychosom Res 1993, 37:147-153.
19. Wallman K, Morton AR, Goodman C, Grove R, Guilfoyle AM: Randomised controlled trial of graded exercise in chronic fatigue syndrome. Med J Aus 2004, 180:444-448.
20.  Ridsdale L, Darbishire L, Seed PT: Is graded exercise better than cognitive behaviour therapy for fatigue? A UK randomized trial in primary care. Psychol Med 2004, 34:37-49.
21. Chalder T, Wallace P, Wessely S: Self-help treatment of chronic fatigue in the community: a randomized trial. Br J Health Psychol 1997, 2:189-197.
22. Powell P, Bentall RP, Nye FJ, Edwards RHT: Randomised controlled trial of patient education  to encourage graded exercise in chronic fatigue syndrome. BMJ 2001, 322:387-390.
23. Komaroff AL, Fagioli LR, Doolittle TH, Gandek B, Gleit MA, Guerriero RT, Kornish J, Ware NC, Ware JE, Bates DW:  Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups. Am J Med 1996, 101: 281-290.
24.  Morriss R, Wearden AJ, Mullis R: Exploring the validity of the Chalder fatigue scale in chronic fatigue syndrome. J Psychosom Res 1998, 45:411-417.
25. Stouten B: Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution. BMC Health Serv Res 2005, 5:37.
26. Cleare AJ, Messa C, Rabiner EA,  Grasby PM: Brain 5-HT1A receptor binding in chronic fatigue syndrome measured using positron emission tomography and (11C)WAY-100635. Biol Psychiatry 2005,  57:239-246.
27. Cleare AJ, Blair D, Chambers S, Wessely S:  Urinary free cortisol in chronic fatigue syndrome. Am J  Psychiatry 2001, 158: 641–643.
28. Skowera A, Cleare A, Blair D, Bevis L, Wessely SC, Peakman M:  High levels of type 2 cytokine-producing cells in chronic fatigue syndrome.  Clin Exp Immunol 2004, 135:294–302.
29. Taylor RR, Jason JA, Curie CJ: Prognosis of chronic fatigue in a community-based sample. Psychosom Med  2002,  64: 319–327.
30. Candy B, Chalder T, Cleare AJ, Peakman A, Skowera A, Wessely S, Weinman J, Zuckerman M, Hotopf M: Predictors of fatigue following the onset of infectious mononucleosis. Psychol Med 2003, 33: 847–855.
31. Deale A, Chalder T, Marks I, Wessely S: Cognitive behavior therapy for chronic fatigue syndrome: a randomized controlled trial. Am J Psychiatry 1997, 154:408-414.
32.  Ridsdale L, Godfrey E, Chalder T, Seed P, King M, Wallace P, Wessely S and the Fatigue trialist Group:  Chronic fatigue in general practice: is counselling as good as cognitive behaviour therapy? A UK randomised trial. Br J Gen Pract 2001,  51:19-24.
33. Ho-Yen DO,  McNamara I: General practitioners' experience of the chronic fatigue syndrome.  Br J Gen Pract 1991, 41:324-326.

* * *
If I am staying within my limits, I'm not fatigued -- I feel pretty good ... until I get up and try to do something, and then the fatigue hits pretty quickly.  When my limits were extremely low, I'd wake up exhausted because I was constantly overdrawn at the energy bank, but once I reduced from 3 trips a day to the kitchen to 1 or 2 (and keeping bottled water and cereal bars under the bed for the other meals), I woke up feeling more in line with my actual sleep amounts, i.e., if I had 2 hours sleep, I'd wake up tired, but if I had 8 hours sleep, I'd wake up feeling human.
 
I don't have trouble getting the motivation to start things, I have trouble having the stamina to complete what I've started.  I often have several half-done chores where I've started and then had to lie down partway through, and when I got up something else had become more pressing than completing what I was doing previously.
 
As far as the autonomic dysfunction weirdnesses, one day when it was 108 out, I had such teeth-chattering chills that I could not even safely get off the couch to get my doctor's phone number to call and ask her advice what to do about the violent shivering: should I respond to the shivers by crawling under a pile of blankets or would the actual temperature in the room result in my getting heatstroke?  (Answer: one light blanket or a flannel sheet to keep the body heat in till you warm up.)
 
Thanks to Ellen for another good article that tells it like it really is.  Google "Ellen Goudsmit" and "pacing" for more informative articles.



Thursday, October 23, 2008

Published comment on PACE Trial

[The exact cost of the PACE Trial is unknown but one of the
co-investigators, Michael Sharpe, has said it would be nearly £4m (=US$6.5m
= 5 Euro. Tom]

http://www.biomedcentral.com/1471-2377/7/6/comments#310638

The dropping of actometers as an outcome measure and other points relating
to the outcome measures being used


Tom Kindlon   (22 October 2008)

In their reply to my comments, Peter White and colleagues say they are using
[i]"several objective outcome measures"[/i] [1]. If they think these tests
are useful as objective outcome measures, why is at least one of them not
being used as a primary outcome measure rather than the current situation
where there are only two subjective outcome measures being used. I have
already made some points on the outcome measures but another one is that the
bimodal Chalder Fatigue Scale hardly seems a very good outcome measure for a
"CFS/ME" trial where there is likely going to be so many maximum or near
maximum scoring initially[2]

Also, there are so many (14) secondary outcome measures in this study, along
with so many (18) predictor variables, that it seems unlikely all the
different methods of looking at the secondary outcome measures can be
explored in the final published paper, given authors are encouraged not to
make papers too long (especially journals that have paper editions). The
protocol itself is 20 pages long when all the different aspects of it are
listed! At least some of the information will need to be re-iterated in the
final paper.

It is of course important to take the burden on participants into account
when deciding what outcome measures to use. However I find the following
point very strange:

[i]"Although we originally planned to use actigraphy as an outcome measure,
as well as a baseline measure, we decided that a test that required
participants to wear an actometer around their ankle for a week was too
great a burden at the end of the trial."[/i]

Firstly they clearly don't find it that great a burden that they drop it
altogether as it is being used on patients before the start. If they feel it
was that big of a burden, it should probably have been dropped altogether.

Of course, other studies in the area have used measuring over a similar or
longer period. For example, Bazelmans [3] used an actometer over 14 days,
Black [4] used actigraphy over 14 days, Sisto[5] used actigraphy over 7
days, Vercoulen[6] used an actometer over 12 days and Van der Werf [7] used
an actometer for 12 days.

Also if one wants to reduce the burden on patients, why not take out one or
both of the exercise tests instead. As the clinicians in the study would
know, post-exertional symptoms are part of the condition.

For example, Nijs[8] performed a gentle walking exercise on patients where
they walked on average 558m(+/-340) (range: 120-1620) at a speed of 0.9m/s
(+/-0.2) (range: 0.6-1.1). This resulted in a statistically significant
(p<0.05) worsening of scores in the following areas when comparing
pre-exercise, post-exercise and 24 hour post-exercise scores
using ANOVA:
VAS fatigue, VAS musculoskeletal pain, VAS sore throat, SF-36 bodily pain
and SF-36 general health percention. 14 out of 24 subjects experienced a
clinically meaningful change (worsening) in bodily pain (i.e. a minimum
change of the SF-36 bodily pain subscale score of at least 10).

Those results are similar to another study[9] which involved the acute
effects of 10 discontinuous 3-minute exercise bouts on a treadmill in 10 CFS
patients. In between exercise bouts, there was a 3-minute recovery period
between exercise bouts. The participants walked at a comfortable walking
pace self-selected by the subjects. On average, the subjects walked at a
speed of 0.71+/-0.20 m/s. Some patients reported experiencing headaches, leg
pain, fatigue or sore throats.

In another study, Lapp [10] (not to be confused with Clapp[9]) reported on
the effects of 31 patients to his practice who were asked to monitor their
symptoms three weeks before to 12 days after a maximal exercise test. 74% of
the patients experienced worsening fatigue
and 26% stayed the same. None
improved. The average relapse lasted 8.82 days although 22% were still in
relapse when the study ended at 12 days. There were similar changes with
exercise in lymph pain, depression, abdominal pain, sleep quality, joing and
muscle pain and sore throat.

These are just a small selection of the studies which show patients
experience an exacerbation of their symptoms following exercise testing. So
these are the sorts of symptoms the patients may expect following the
exercise.
This reminds me that there seems to be a lot of concentration on
measuring fatigue in this study - there are many other symptoms that are
part of "CFS/ME".

If they had used actometers instead of, say, doing one of the exercise
tests, the response to the exercise could have been followed to see how long
and how severe an effect the exercise had on the patient. Or they could have
dropped both the exercise tests altogether.

As well as "subjective" findings following exercise testing, there have also
been objective findings. Arnold et al[11] found excessive intracellular
acidoss of skeletal muscles with exercise. Jammes[12] found an increase of
damaging oxidative stress following exercise testing. So patients could not
just endure temporary sysptom but possibly also longer-term harm from
exercise testing. There are numerous other exercise abnormalities.


As the clinicians involved in the study probably hear from patients, one of the frustrating things about ME or CFS is that people don't realise the payback that they can have from doing things. This would have been an
opportunity to investigate this as part of the study. But now the effort
patients will put in and the payback they will feel in some ways is being
wasted as the effects won't be measured.

Anyway, to repeat again, given the authors familarity with the literature, I
find it strange that they would decide using an actometer would be worse
than putting patients through two exercise tests.

I also find it surprising that in a study part-funded by the Department of
Work and Pensions (DWP) that the objective outcome measures (not involving
questionnaires) are all once-off exercise tests. It has been established
that patients need to be able to do things on several days during a week
before they can be passed fit for work.

I have mentioned using actometers following exercise tests after an exercise
test above; of course, actometers wouldn't have to be used at that time but
also during a "normal week".

Proponents of pacing methods including APT would say that there is a
"ceiling of activity" that patients can't go above without experiencing a
worsening of symptoms. Black[13] has found evidence of this.
Proponents of
CBT or GET for "CFS/ME" would suggest that patients can gradually just
increase how much activity they can do. Actometers would also have tested
the hypothesis. As it stands, the study will not give us information on this
as just because patients answer questionnaires saying they're improved
(which could simply be because they think they're better) or improve their
exercise results (which might simply be because they're willing to push
themselves more) doesn't prove that they don't have an activity ceiling
above which they experience disabling symptoms (esp. when, as in this study,
there is no follow-up period following the exercise testing). [b]This is the
real "heart" of the issue but given the current design, the question won't
be answered.[/b]

[1] PD White, MC Sharpe, T Chalder, JC DeCesare, R Walwyn, for the PACE
trial management group: Response to comments on "Protocol for the PACE
trial" http://www.biomedcentral.com/1471-2377/7/6/comments#306608

[2] Goudsmit EM, Stouten B, Howes S: Fatigue in Myalgic Encephalomyelitis.
Bulletin of the IACFS/ME - Volume 16, Issue 3. http://tinyurl.com/3zcgw8
i.e.

http://www.iacfsme.org/BULLETINFALL2008/Fall08GoudsmitFatigueinMyalgicEnceph/tabid/292/Default.aspx

[3] Bazelmans E, Bleijenberg G, van der Meer JWM, Folgering H. Is physical
deconditioning a perpetuating factor in chronic fatigue syndrome? A
controlled study on maximal exercise performance and relations with fatigue,
impairment and physical activity. Psychol Med 2001; 31: 107–14.

[4] Black CD, O'Connor PJ, McCully KK. Increased daily physical activity and
fatigue symptoms in chronic fatigue syndrome. Dyn Med 2005; 4: 3.

[5] Sisto SA, Tapp WN, LaManca JJ et al. Physical activity before and after
exercise in women with chronic fatigue syndrome. Q J Med 1998; 91:465–73.

[6] Vercoulen JHMM, Bazelmans E, Swanink CMA et al. Physical activity in
chronic fatigue syndrome assessment and its role in fatigue. J Psych Res
1997; 31: 661–73.

[7] Van der Werf SP, Prins JB, Vercoulen JHM, van der Meer JWM, Bleijenberg
G. Identifying physical activity patterns in chronic fatigue syndrome using
actigraphic assessment. J Psychosom Res 2000; 49: 373–79.

[8] Nijs J, Almond F, De Becker P, Truijen S, Paul L. Can exercise limits
prevent post-exertional malaise in chronic fatigue syndrome? An uncontrolled
clinical trial. Clin Rehabil. 2008 May;22(5):426-35.

[9] Clapp LL, Richardson MT, Smith JF, Wang M, Clapp AJ, Pieroni RE. Acute
effects of thirty minutes of light-intensity, intermittent exercise on
patients with chronic fatigue syndrome. Phys Ther 1999; 79: 749-56.

[10] Lapp, C (1997). Exercise limits in chronic fatigue syndrome. Am J Med,
103: 83-84.

[11] DL Arnold et al. Excessive intracellular acidosis of skeletal muscles
on exercise in the post viral exhaustion / fatigue syndrome: a 31P-NMR
Study. Proceedings of third Annual Meeting of the Society for Magnetic
Resonance in Medicine, New York, 1984, 12-13.

[12] Jammes Y, Steinberg JG, Mambrini O, Bregeon F, Delliaux S: Chronic
fatigue syndrome: assessment of increased oxidative stress and altered
muscle excitability in response to incremental exercise. Journal: J Intern
Med., 2005 Mar;257(3):299-310.

[13] Black CD, McCully KK: Time course of exercise induced alterations in
daily activity in chronic fatigue syndrome. Dyn Med. 2005 Oct 28;4:10.

Competing interests

No competing interests

* * *
 
I wonder if the refusal to include the actimeter readings was because they proved the patients aren't "lazy" -- many of us live alone (divorced because husbands couldn't/wouldn't put up with the added burdens of a disabled wife), so no matter how much the doctors would like to believe that CFS patients are lying in bed all day with a full staff of servants waiting on them hand and foot, the reality is, if you have 2 good hours per day, you're going to spend that time getting groceries, doing laundry, putting together meals...
 
I'll agree with Tom that most people don't understand the after-effects of doing things.  At my worst, it took me a week to do a single load of laundry, because I needed to rest the next day after each step.  To this day, people see that I can go out to run an errand, but don't understand why the ability to go out on Monday does not mean I also have the ability to go out on Tuesday.  Most of the time, I'm limited to 2 days a week -- sometimes I can push it to 3, but they cannot be 3 consecutive days.




 



Published Critique of several CFS trials

[The PACE Trial is also using this scale (and the 0,0,1,1 version) in its
trial as a primary outcome measure.  "Salivary cortisol output before and
after cognitive behavioural therapy for chronic fatigue syndrome" by Roberts
AD, Papadopoulos AS, Wessely S, Chalder T, Cleare AJ said the median score
at the start was 11 so in that case at least 50% (but perhaps a lot more -
they don't give the mean) had the maximum score at the start. 
Somebody
could post that example to the PACE Trial or FINE Trial website.  I'm
appending my previous comment from before - it may appear slightly
complicated initially but isn't really.  Tom]


Study confirms problems of using the 11-item bimodal Chalder Fatigue Scale
as an outcome measure


Tom Kindlon   (23 October 2008)

A study[1] has recently been published which confirms the problems with the
11-item bimodal Chalder Fatigue Scale I highlighted in my first comment[2].

In a group of 26 people with ME recruited from a local support group in
England, it found a mean bimodal score of 9.81 (SD 2.04). Fifty per cent of
the patients recorded the maximum score using the bimodal method and 77%
recorded the two highest scores.

The two questions which attracted the lowest scores and which were
responsible for most of the variance were 'do you feel sleepy or drowsy' and
'do you have problems starting things'. These are hardly crucial elements of
CFS/ME.


[1] Goudsmit EM, Stouten B, Howes S: Fatigue in Myalgic Encephalomyelitis.
Bulletin of the IACFS/ME - Volume 16, Issue 3. http://tinyurl.com/3zcgw8
i.e.

http://www.iacfsme.org/BULLETINFALL2008/Fall08GoudsmitFatigueinMyalgicEnceph/tabid/292/Default.aspx

[2] Kindlon Tom: Why is the 11-item bimodal Chalder Fatigue Scale being used
as a primary outcome measure?
http://www.biomedcentral.com/1741-7015/4/9/comments

Competing interests

No competing interests


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

Why is the 11-item bimodal Chalder Fatigue Scale being used as a primary
outcome measure?

Tom Kindlon   (17 June 2008)

Stouten [1] has analysed some commonly used fatigue scales in the CFS area:
the Chalder Fatigue Scale, the Checklist Individual Strength and the Krupp
Fatigue Severity. He calculated the lower bound for the number and
percentage of items with the maximum score for several studies and found
that "extreme scoring" was common in studies in the field using these
instruments.

What is clear from this analysis is that the bimodal Chalder Fatigue Scale
comes out worst in this regard.

Two of the authors of the current study should have been "intimately" aware
of this problem as they were involved in one [2] of the two studies examined
by Stouten [1] that used the 11-item bimodal Chalder Fatigue Scale.

Here is the data from that study[2]:

Baseline assessment for four intervention groups:

Mean (95% Confidence Interval):

10.6 (10.4 to 10.9)

10.4 (10.0 to 10.7)

9.9 (9.2 to 10.6)

10.2 (9.9 to 10.6)

In percentage terms, this means that the lower bounds for the number of
items with the maximum score for intervention groups were:

96%

95%

90%

93%

One can also calculate a lower bound for the percentage of patients who
scored a maximum of 11 out of 11 for the items in the four intervention

groups:

60%

40%

0%

20%

It should be remembered that these are lower bounds and the actual figure is
likely to be higher (unless the authors give this data one can't calculate
it from the mean).

This can be illustrated by calculating the lower bound for the percentage of
maximum (11 out of 11) scores for one study of an outpatient clinic in
London[3] and comparing it to the actually precentage with the maximum score
that was given.

The Mean Score on the 11-item bimodal Chalder Fatigue Scale was 9.9. This
translates to a lower bound for the percentage of patients who scored a
maximum of 11 out of 11 of 0% (this could be achieved, for example, by 90%
of the patients scoring 10/11 and 10% scoring 9/11). However the actual
percentage of patients who scored the maximum (11/11) was 58%.

This shows that the 11-item bimodal Chalder Fatigue Scale doesn't just have
a low ceiling for each individual question but also for the total score when
applied to Chronic Fatigue Syndrome patients.

Why is this important? Well, as the authors point out, some surveys of
patient groups have found patients reporting being made worse by
interventions such as Graded Exercise Therapy and Cognitive Behavioural
Therapy (CBT).

For example, the results of a large survey with 2338 respondents were
published in a report for the Chief Medical Officer[4]: it found that, of
285 who had done Cognitive Behavioural Therapy, 26% reported being made
worse by the program, compared to 7% who said they were helped and 67% who
said it made no difference. Of 1214 people who had done a graded exercise
program, 50% had been been made worse by it (compared to 34% who said it
helped and 16% who said it made no difference).

These are not once-off results. For example, a recently published report of
2763 patients with ME or CFS in the UK[5] which asked about people's
experiences of treatments over the last three years, found that of 699 who
said they'd tried Graded Exercise Therapy, 34% said they'd been made worse
by it compared to 45% who said they'd been helped and 21% who said it made
no difference.

The contention that people would not have being made worse by a treatment if
they had done the treatment under specialist supervision, is not backed up
by the data from this study[5]
. Patients were asked who provided the GET
treatment. Of the 567 who answered this question, 181 (31.92%) said it had
made them worse compared to 276 (48.68%) who said it helped and 110 (19.40%)
who said it made no difference; these are very similar percentages to the
subgroup of 335 patients who had done the management strategy under an "NHS
specialist": 111 (31.27%) of this group said they'd been made worse compared
to 162 (45.63%) who said they'd been helped and 82 (23.10%) who said it made
no difference.

Again these don't appear to be once-off figures. In 2003, Action for ME did
a smaller survey of 550 members asking about their experiences of
Treatments[6]. 354 (64%) replied. The numbers for this study were small but
if you combined the data from those who had done GET under a
Physiotherapist, Occuapational Therapist, Doctor or Behavioural Therapist,
the results are: Negative 22 (56.41%) Neutral 2 (5.13%) Positive 15
(38.46%). [These don't compare favourably to the small group who did GET
under no professional: Negative 1 (8.33%), Neutral 4 (33%) and Positive 7
(58%)]. A large percentage of the patients also reported being made by made
worse by CBT in this study. Of 55 who had done CBT under a CBT
Therapist/psychologist, Doctor/Psychiatrist, CPN/Other Mental Health,
Counsellor/Psychotherapist, OT or Nurse specialist, 19 (34.55%) said it had
made them worse compared to 24 (43.64%) who had been helped and 12 (21.82%)
who said it made no difference.

The reason this is important is that if somebody already has a score of
11/11, they can't come up on the 11-item bimodal Chalder Fatigue Scale as
being made worse on the treatment. Indeed, once they improved on one item,
it would be marked as an improvement overall even if they actually felt
worse on one or more of the other 10 items
. Of course, this doesn't just
apply to patients who score 11 out of 11; a patient could score 10/11 (say),
feel worse on several items they'd already scored the maximum but come out
as an improver once they improved on one idea. Saying all that, it would be
good if the authors reported how many patients in each branch of the study
scored the maximum.

Some of the items on the 11-item Chalder Fatigue Scale may also not be good
as a measure of severity of CFS or ME. For example, somebody could be severe
but not answer positively to the question, 'do you feel sleepy or drowsy'.

Similarly a patient could disimprove and still not answer positively to this
question. So a patient who scores 11 may not necessarily be more severely
affected on a patient scoring 10. Saying all this, the generally very high
scores (i.e. close to 11 on average) found in previous studies in the field
suggest that the Likert method (0,1,2,3) of scoring does appear preferable.
However it too also suffers from a ceiling effect although not to the same
extent[1]. Also as previously pointed out, because of questions such as 'do
you feel sleepy or drowsy', (which many if not most would feel are not
intrinsic to Chronic Fatigue Syndrome or ME), even the likert version of the
Chalder Fatigue Scale is not ideal for measuring severity of the condition.

[1] Stouten B: Identification of ambiguities in the 1994 chronic fatigue
syndrome research case definition and recommendations for resolution. BMC
Health Serv Res. 2005 May 13;5:37.

http://www.biomedcentral.com/1472-6963/5/37

[2] Powell P, Bentall RP, Nye FJ, Edwards RHT: Randomised controlled trial
of patient education to encourage graded exercise in chronic fatigue
syndrome. BMJ 2001, 322:387-390.

http://www.bmj.com/cgi/content/full/322/7283/387

[3] Jenkins M, Rayman M. Nutrient intake is unrelated to nutrient status in
patients with chronic fatigue syndrome. Journal of Nutritional &
Environmental Medicine, 2005, 15, 4, 177-189.

[4] Independent Working Group: A Report of the CFS/ME working group. Report
to the Chief Medical Officer of an Independent Working Group. London:
Department of Health; 2002.

[5] Action for ME & Association of Youth with ME Survey 2008.
http://afme.wordpress.com/  (Accessed 31st May 2008)

[6] Action for ME Survey 2003.

www.afme.org.uk/res/img/resources/AfME%20members%20survey.PDF  (Accessed 31st
May 2008)

Competing interests

No competing interests




Check out Leukemia drug gives hopes to MS sufferers - CNN.com

NCF has found a link between leukemia and CFS, as well as links between MS and CFS.  Could this be the next big thing for CFS patients, too?
 
 

Leukemia drug gives hopes to MS sufferers

  • Story Highlights
  • Researchers: Drug used to treat leukemia can halt effects of multiple sclerosis
  • Drug called alemtuzumab can stop advance of MS in its early stages
  • MS causes immune system to attack nerve fibres in central nervous system
  • More research needed before drug can be approved for treatment of MS
 

LONDON, England -- Researchers in Britain say they have found that a drug used to treat leukemia can halt and even reverse the debilitating effects of multiple sclerosis (MS).

The findings published Thursday in the New England Journal of Medicine will bring fresh hope to the world's millions of sufferers of the the auto-immune disease.

Researchers from the University of Cambridge in eastern England found that a drug called alemtuzumab can stop the advance of MS in its early stages.

MS causes the body's immune system to attack nerve fibres in the central nervous system.

Symptoms of the disease can include loss of sight and mobility, depression, fatigue and cognitive problems. There is no cure, and few effective treatments.

In trials among sufferers, alemtuzumab cut the number of attacks and helped them recover lost functions. It even apparently helped repair damaged brain tissue so individuals were less disabled than at the start of the study.

Researchers also compared the effectiveness of alemtuzumab with interferon beta-1a, a leading MS treatment.

They found patients treated with alemtuzumab were 74 percent less likely to experience relapses than those taking interferon beta-1a.

"The ability of an MS drug to promote brain repair is unprecedented," said Dr. Alasdair Coles, a lecturer at Cambridge university's department of clinical neurosciences, who worked on the study.

"We are witnessing a drug which, if given early enough, might effectively stop the advancement of the disease and also restore lost function by promoting repair of the damaged brain tissue."

The MS Society, Britain's largest support charity for those affected by the condition, said the results of the trial will bring hope to many thousands of people living with the condition.

Lee Dunster, head of research at the charity, said: "The MS Society has been following this trial closely and we are delighted that it has reported such positive results.

"This is the first drug that has shown the potential to halt and even reverse the debilitating effects of MS and this news will rightly bring hope to people living with the condition day in, day out."

Despite the optimism researchers said further research must be carried out before the drug could be approved for the treatment of MS.

 

 



Write your Elected Officials

As you've probably heard, there's a move afoot in both the US and UK to ban incandescent light bulbs in 2010.  A lawyer is framing a challenge to it on ADA grounds: fluorescent lights have adverse affects on people with epilepsy, migraines, autism, lupus, other neurological conditions... and therefore, "reasonable accommodation" of those conditions would require the continuing availability of the traditional light bulbs that don't affect us.
 
However, here's some information that also challenges it on environmental grounds.
 
We all need to be writing to our elected officials to enlighten them that this is NOT a good decision.
 

Tony writes: "This article is on Russ Andrews' website. Russ probably knows more about mains electricity in the UK than any other person."
 My tests have shown that the CFLs use half the power of a 60W lamp, not quarter as stated and that's before taking into account the extra power the supplier must generate.
The net result of using CFLs is that there is no saving whatever…… quite the opposite; the electricity supply system has doubled its output and doubled its carbon emissions. The more people use CFLs, the worse the problem will become. And that's before we've even talked about the fact that CFLs use mercury in their construction, which leads to more issues in their disposal.
 
 




 



CFS Facts

 
"I have treated more than 2,000 AIDS and CFS patients in my career. And the CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!" 
                                             – Dr. Marc Loveless
(infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, in Congressional Testimony, CFS Awareness Day, May 12, 1995)
 
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a disabling neuroimmune disease that affects more Americans than AIDS, breast cancer and lung cancer combined; more people than have multiple sclerosis or cystic fibrosis; a disease where patients are more functionally impaired than those suffering from diabetes, heart failure and kidney disease. This disease costs the U.S. as much as $26 billion annually in lost productivity (according to a study by Dr. Jason), and affects at least a million Americans.  The numbers of economic impact and patients are equally significant in other countries.
 
Yet after nearly four decades as an internationally recognized and categorized disabling neurological disorder, ME/CFS here in the U.S. remains one of the most underfunded, maligned, miscategorized life-altering illnesses of our time.
 
In every other English-speaking country they use the more accurate scientific name, Myalgic Encephalomyelitis; only in the US has ME been essentially abolished from the vocabulary and medical literature – it's almost impossible to find a doctor in the US who will give you an ME diagnosis. The NIH has repeatedly misappropriated funds, sent requests for research funding to ad hoc panels with few or no expert members, and ignored recommendations by medical committees and the Chronic Fatigue Syndrome Advisory Committee (CFSAC) Recommendations available at www.cfids-me.org/cfscc/recommend.html.  The NIH and CDC continue to fund studies that try to promulgate the false premise of psychological problems; studies which are polluted by the inclusion of patients who really do have psychiatric conditions and definitely do not have ME/CFS.  The original diagnostic criteria have been so watered-down in an attempt to include patients who meet the NIH/CDC-desired psychiatric paradigm that now the Incline Village patients from whom the criteria were established don't fit the description of their own disease!
 
Twenty years after the Incline Village epidemic, the CDC admits that 85% of patients have not been diagnosed – and the majority of those who have been diagnosed receive little or no medical treatment. There is still no cure, nor even the hope of one.
 
As long as NIH and CDC continue to bury what is known about this disease, every man, woman and child in America is at risk of contracting the illness. Those who do fall ill soon discover the U.S. agencies do not even have the most basic clinical treatment standards available for their doctors; the information on the CDC website even states that the tests which would be abnormal in ME/CFS are not necessary in diagnosing CFS!
 
It has been more than10 years since Hilary Johnson's Osler's Web was published, exposing the truth which CDC/NIH have tried to hide: ME/CFS was portrayed as a purely psychological problem in order to save money for the government and insurance companies. (Many private disability policies require only two years of payments for mental illness.) CDC/NIH have even misrepresented the results of recent research, proving this leopard hasn't changed its spots.
 
Researcher Dr. Muhammed Yunus says "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." And this is certainly true of CDC's refusal to acknowledge the major biological underpinnings discovered by 5000+ studies here and abroad about this disabling disease. Instead they emphasized how "stress" affects patients, yet again implying a primarily psychological cause, while patients emphasize an infectious onset.  Even patients who were doctors and nurses who fell ill at work and were promptly tucked into a bed in their own hospital have been accused of malingering and psychiatric problems, in complete contradiction of the hospital-chart evidence that their health began to deteriorate with a flu-like illness!
 
Too many doctors still fail to distinguish between the symptom of "chronic fatigue" resulting from overwork/undersleep or as a symptom of other medical conditions and the entirely-different neuroimmune disease of ME/CFS.  We cannot entirely blame the doctors: they're not taught the difference in medical school, and the information disseminated by CDC doesn't help!
 
Dr. Elizabeth Dowsett observes:
"Research workers must be encouraged and appropriately funded to work in this field. However they should first be directed to papers published before 1988, the time at which all specialized experience about poliomyelitis and associated infections seem to have vanished mysteriously!" 
Just coincidentally (or maybe not), 1988 was the date that CDC changed the name from Myalgic Encephalomyelitis to Chronic Fatigue Syndrome.
 
And it's because of that change that every time I cite Dr. Loveless saying that CFS is worse than AIDS, I get verbally abused; people just can't imagine that the silly little name applied to my disease can encompass AIDS-like immune dysfunctions, MS-like neurological problems, Alzheimers-like disorientation, and post-viral heart/brain/spinal cord damage which has been found in multiple autopsies. 
 
Symptoms of paralytic muscle weakness from overuse that are "to be expected" in post-polio patients are disparaged in CFS patients, who are told that "it's absolutely impossible" for muscles to get weaker with use, and that they should use their muscles more to build them up. However, I have personal experience with a post-polio patient, and found that when I followed her doctor's advice to stop using my hands to the point of muscle fatigue, I was able to use them better when I really did need to use them.  If that means that I have to smile sweetly at strange men in public places and ask them to help me open my bottle of juice, so be it; it leaves me that much more functionality when I'm home alone. 
 
But generations of doctors who've grown up after the eradication of polio in the First World have never seen enough patients to make the necessary connection between the symptoms of poliomyelitis and Myalgic Encephalomyelitis,* and those doctors who've seen the epidemics first-hand are now retired.  The generation before mine was the last in the US to have an epidemic; by the 1960s, every child in the US was getting the polio vaccine.  Only because I often socialized upward in age did I get to know as many polio patients as I do.  (There are still periodic outbreaks in the Third World, where vaccines are often unavailable or unaffordable, if anyone wants to study it "up close and personal".)
 
Dr. Bruno notes that after reading his book "you now know more than any doctor you're likely to meet"; this is too often the situation, and I've certainly run into it more than once myself, with doctors who don't even know the most basic information about how to differentiate CFS from depression, and aren't interested in learning when I offer to explain it to them. "There is one thing we still don't understand: why doctors and governments throughout the world refuse to acknowledge, let alone learn about and provide treatment."
 
In the US, this is likely partially influenced by the government's Steve Straus initially ascribing CFS to "depressed menopausal women"; having taken such a stance early on, it is too embarrassing for NIH/CDC to back down so far that they have to admit that it has nothing to do with being depressed, menopausal, or a woman.  Researchers have known for over 20 years that Ampligen, an anti-viral medication, provides a miracle cure for CFS patients, and also acknowledge that FDA cannot approve it because that would require NIH/CDC to say that CFS is a contagious post-viral condition, rather than one based on "stress" or other emotional factors.  Meanwhile, Ampligen is available in other countries; if and when I hit the lotto, I'm going somewhere that has approved it.**
 
Penny-wise and pound-foolish, it has been intimated that because of the cost of Ampligen treatment, it will not be available to Medicaid patients, if it is ever approved for use in the US.  The government would rather pay $15,000+ a year in disability/Medicaid for the rest of your life than to pay $20,000 for one year of Ampligen to get you back to work so you can pay taxes and afford to pay for your own Ampligen treatments!  I am fortunate to have relatives who would and could make me a loan for something guaranteed to get me back on my feet, but I'm getting tired of waiting for it to become available so I can try it.
 
 (Thanks to Steve for his help with the first few drafts of this.  It's always a pleasure to work with you!)
 
FOOTNOTES:
*Dr. Richard Bruno writes "If you had paralysis or muscle weakness, you certainly did have myelitis, an inflammation of the motor neurons in the spinal cord."  He also notes that Coxsackie virus, which has been found in CFS patients, "can cause damage to the brain and spinal cord that is identical to polio."
 
**There are some activists who claim that Ampligen has serious after-effects, and may lead to early death.  My doctor reminds me with each prescription he writes that "every medication has side effects" some of which may not be apparent for a couple decades.  It needs to be a personal decision for each patient whether they feel the benefit outweighs the risk; I, for one, would rather sacrifice 10 years at the end of my life to have some semblance of normal life back now, than to spend the rest of my life feeling this bad because someone else has made the decision for me that I'm not allowed to take the one thing that patients have called a "miracle cure" because the FDA is more focused on the risk rather than the reward.  Easy for them to say, there's no downside for them in not taking it!
 




 



CFS Myths

 
Myth 1: CFS is a disease defined just by a group of symptoms. There are no objective abnormalities.
Many published studies report abnormalities of the central nervous system, autonomic nervous system, and immune system in patients with CFS – abnormalities not present in comparison groups who are healthy or have other fatiguing illnesses.

Schondorf R, Freeman R. The importance of orthostatic intolerance in the chronic fatigue syndrome. Am J Med Sci 1999;317(2):117-123.
Scott LV, Medbak S, Dinan TG. Blunted adrenocorticotropin and cortisol responses to corticotropicreleasing hormone stimulation in chronic fatigue syndrome. Acta Psychiatr Scand 1998;97:450- 457.
Patarca R, Klimas N, Sandler D, Garcia MV, Fletcher MA. Interindividual immune status variation patterns in patients with chronic fatigue syndrome: association with gender and tumor necrosis factor system. J of CFS 2(1):7-41, 1996.
Cannon JG, Angel JB, Abad LW, Vannier E, Mileno MD, Fagioli L, Wolff SM, Komaroff AL. Interleukin- 1 beta, interleukin-1 receptor antagonist, and soluble interleukin-1 receptor type II secretion in chronic fatigue syndrome. Journal of Clinical Immunology 17(3):253-61, 1997.
De Meirleir, K., Bisbal, C., Campine, I., De Becker, P., Salehzada, T., Demettre, E., Lebleu, B. (2000). A 37 kDa 2-5A binding protein as a potential biochemical marker for chronic fatigue syndrome. The American Journal of Medicine, 108, 99-105
Natelson, B.H., Weaver, S.A., Tseng, C-L., & Ottenweller, J.E. (2005). Spinal fluid abnormalities in patients with chronic fatigue syndrome. Clinical and Diagnostic Laboratory Immunology, 12, 52-55.
Lange, G., Steffner, J., Cook, D.B., Bly, B.M., Christodoulou, C., Liu, W.C., Deluca, J., & Natelson, B.H. (2005). Objective evidence of cognitive complaints in chronic fatigue syndrome: A BOLD fMRI study of verbal working memory. Neuroimage, 26(2), 513-524.
Hanson, S.J., Gause, W., & Natelson, B. (2001). Detection of immunologically significant factors for chronic fatigue syndrome using neural-network classifiers. Clinical and Diagnostic Laboratory Immunology, 8, 658-662.
Peckerman, A., LaManca, J.J., Dahl, K.A., Chemitiganti, R, Qureishi, B. Natelson, B.H. (2003). Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome. The American Journal of the Medical Sciences, 2003, 326(2), 55-60.
Jason, L.A., Corradi, K., Torres-Harding, S., Taylor, R.R., & King, C. (2005). Chronic fatigue syndrome: The need for subtypes. Neuropsychology Review, 15, 29-58.
 
Myth 2: People with CFS who think they are suffering from a physical illness have a worse prognosis, which just goes to show that it is their perception of a physical cause for their illness that is keeping them from functioning normally.
It is more likely that people who think they are suffering from a physical illness have a worse prognosis because they are correct in recognizing that they have a physical illness, one that doctors do not yet have effective treatments for.
Jason, L.A., Fennell, P., Taylor, R.R. (Editors)(2003). Handbook of chronic fatigue syndrome. New York: John Wiley & Sons, Inc.
 
Myth 3: Whenever one research group finds a biological abnormality in patients with CFS, another research group can't find it.
With research on virtually all illnesses, there are always some reports in the research literature that conflict. The question with CFS or any illness is: Counting all of the published reports, and the numbers of patients in all of these reports, do the great majority of reports involving the great majority of patients find objective biological abnormalities? The answer for CFS, with regard to studies of the nervous system and immune system, is yes.

Komaroff, A.L. (2000). The biology of chronic fatigue syndrome. American Journal of Medicine, 108, 169-171.
Evengard, B., Schacterle, R.S., & Komaroff, A.L. (1999). Chronic fatigue syndrome: New insights and old ignorance. Journal of Internal Medicine, 246, 455-469.
 
Myth 4: CFS only affects white and higher income individuals, and is a relatively rare disorder. Recent evidence from community prevalence studies indicates that CFS is not a YUPPIE disease, and in fact, it occurs more often among Latino and African-American minority groups and those with lower incomes. CFS affects from 800,000 to one million individuals in the US, and thus represents one of the more common chronic health conditions.
Reyes, M., Nisenbaum, R., Hoaglin, D.C., Unger, E.R., Emmons, C., Randall, B., Stewart, G., Abbey, S., Jones, J. F., Gantz, N., Minden, S., & Reeves, W.C. (2003) Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas. Archives of Internal Medicine, 163, 1530-1536.
Jason, L.A., Richman, J.A., Rademaker, A.W., Jordan, K.M., Plioplys, A.V., Taylor, R., McCready, W., Huang, C., & Plioplys, S. (1999). A community-based study of chronic fatigue syndrome. Archives of Internal Medicine. 159, 2129-2137.
 
Myth 5: Cognitive behavior therapy interventions can cure CFS.
Cognitive behavior therapy is widely used to help people cope with chronic illnesses, both "physical" illnesses and psychological illnesses. While these types of psychological interventions can help patients with CFS cope better with their symptoms and deal with the consequences of having a chronic health problem, these types of intervention do not cure the illness.

Van Hoof, E. (2004). Cognitive behavioral therapy as cure-all for CFS. Journal of Chronic Fatigue Syndrome, 11, 43-47.
 
Myth 6: Patients with CFS are either lazy or malingering.
There is no truth to this statement, and many patients with this condition would like nothing better than to have their old lifestyle back. They are very motivated and often go to many physicians to find a way of getting better.

Friedberg, F., & Jason, L.A. (1998). Understanding chronic fatigue syndrome: An empirical guide to assessment and treatment. Washington, D.C.: American Psychological Association.
 
Myth 7: All cases of CFS are caused by the Epstein-Barr Virus (EBV). These are common misconceptions among primary care providers. The onset of CFS is sometimes but not always linked with the recent presence of an infection. CFS has been reported as following acute mononucleosis (a viral infection like EBV), Lyme disease (a bacterial infection) and Q fever (an infection with a different type of infectious agent).
Komaroff, A.L. (2000b). The physical basis of CFS. The CFIDS Research Review, 1(2), 1-3, 11.
 
Myth 8: Patients with CFS can be cured by exercise.
It is a myth that patients with CFS can be cured by exercise, but it is also a myth that no one with CFS can ever benefit from some physical activity. For some patients, a carefully monitored program incorporating paced and non-fatiguing activity can be used to strengthen and condition muscles. But it is worth noting that Black, O'Connor, and McCully (2005) recently found that with an average 28% increase over baseline levels of daily physical activity over for a four week period, patients with CFS indicated they had worsening overall mood, muscle pain intensity and time spent each day with fatigue.

Black, C.D., O'Connor, P.J., & McCully, K.K. (2005). Increased daily physical activity and fatigue symptoms in chronic fatigue syndrome. Dynamic Medicine, 4:3 (doi:10;1186/1476-5918-4- 3.
Edmonds, M., McGuire, H., & Price, J. (2004). Exercise therapy for chronic fatigue syndrome. The Cochrane Library, Issue 3, 1-22.
 
Myth 9: CFS is difficult to diagnose.
Actually it is pretty straightforward to diagnose when familiar with the case definition. It is, however, important to determine whether the Fukuda et al. (1994) or the Canadian case definition of ME/CFS is being used (Caruthers et al., 2003).

Fukuda, K., Straus, S.E., Hickie, I., Sharpe, M.C., Dobbins, J.G., & Komaroff, A. (1994). The Chronic Fatigue Syndrome: A comprehensive approach to its definition and study. Annals of Internal Medicine, 121, 953-959.
Carruthers, B.M., Jain, A.K., DeMeirleir, K.L., Peterson, D.L., Klimas, N.G., Lerner, A.M., Bested, A.C., Flor-Henry, P., Joshi, P., Powles, A.C.P., Sherkey, J.A., & van de Sande, M.I. (2003). Myalgic encephalomyelitis/chronic fatigue syndrome: Clinical working case definition, diagnostic and treatments protocols. Journal of Chronic Fatigue Syndrome, 11, 7-115.