Saturday, November 15, 2008

Dr. Gupta: Not the Cure for AIDS

there are many caveats to this story.

1. Even though their tests do not show a presence of HIV in his system, doesn't mean it's not there. This virus is known for hiding well and popping up later. It's been seen before in patients taking anti-retroviral drugs. It is possible that if more sophisticated tests were used on this patient, they would detect the virus that is still in his body. So it's still not entirely clear that he is HIV-free.

2. The chances of finding a bone marrow donor with two copies of this genetic mutation for everyone one of the 33 million people worldwide living with HIV or AIDS is not realistic because only one percent of Caucasians and zero percent of African Americans or Asians have this particular genetic mutation.

3. Bone marrow transplants are dangerous for patients.

4. Bone marrow transplants are very expensive and not an option for many people living with this disease around the world.

Both the doctors in Berlin and AIDS experts we've spoken with say this is a "proof of principle." "It's an interesting case for researchers," according to Dr. Rudolf Tauber

* * *
This doesn't answer my question whether this is a possibility for CFS, but does point out why, even if it is, research still needs to continue.

Steve's Correspondence with CDC

Correspondence about Myalgic Encephalomyelitis with  Dr. Gerberding, Director of the CDC  

Here is, for your information, an exchange of correspondence between myself (representing 40-150 M.E./CFS patients in the Sacramento Valley area of California), and Dr. Julie Gerberding, Director of CDC, which took place awhile back, Re: the lack of recognition & treatment of the disease, Myalgic Encephalomyelitis.
You can judge whether Dr. Gerberding skirted the issues or not.
From this correspondence, it could be said that the CDC considers M. E. a separate disease. Why it is not treating & looking for answers for patients who suffer from M. E. is still in question after this correspondence has been evaluated.
It seems that this response from the Director represents the continued refusal by CDC
1. To recognize the outbreaks of Myalgic Encephalomyelitis, which was pointed out to them by Dr. Byron Hyde during the 1980s;
2. To consider useful diagnostic criteria such as Ramsey's Definition or the 2003 Consensus Document;
3. To consider the preponderance of evidence of research (more updated research is available now than is cited in my letters);
4. To specify clearly the criteria for the disease, and instead rely on the flawed Reeves empiric definition, which has been found to be unsupportable by Dr. Leonard Jason and also cited as unreliable disease markers by Co-Cure members such as Tom Kindlon, Mary Schweitzer and others.
There are three parts to the information below:
1. My letter to Dr. Gerberding
2. Dr. Gerberding's response (after urging from California Senator Dianne Feinstein)
3. My counterargument to Dr. Gerberding's response, which went unanswered.
Steven Du Pre
Poetry website:
"By words the mind is winged." Aristophanes
Website for National Alliance for Myalgic Encephalomyelitis: 
Dr. J. Gerberding, CDC Director
1600 Clifton Road NE, Mailstop D14
Atlanta, Georgia 30333
Dr. Gerberding:
I commend the CDC on the recent study highlighting the tremendous economic loss to the nation caused by the disease, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Dr. Reeves and his team did an excellent job of bringing this part of the suffering & loss of this disease to the attention of the CDC and the public.
To get desperately needed traction in useful research on the serious physiological abnormalities in this disease, we now need to turn our focus on:
Adoption of the 2003 Canadian Consensus Criteria for M.E./CFS, especially the "Clinical Working Case Definition" and "Diagnostic Protocol" (definitive set of criteria by respected, international experts from the US, Canada, and Belgium); see the following web site: (cardiac abnormalities should also be included) 
A name change back to the original Myalgic Encephalomyelitis M.E. has been classified by the WHO since 1969 as a neurological disease (G93.3 in ICD-10 currently in use worldwide, and ICD-9-CM 323.9 in US), and is easily substantiated as a neurological disease by abnormal SPECT or PET brain scans that become even more abnormal after exercise. The US needs to adopt the WHO ICD-10 neurological classification of ME/CFS. "Chronic fatigue" needs to be removed.
Adoption of this Clinical Case Working Definition & the name change (with the appropriate G93.3 ICD code for the ICD-10 with neurological classification) would accomplish 4 things:
1. Correct the CDC mistake in 1988 when they chose a trivial name and ICD code for a disease which already had been in the ICD with useful diagnostic criteria for 21 years (the arbitrary selection of the name Chronic Fatigue Syndrome was also an unscientific procedure - naming a disease after one symptom, especially detrimental in a multi-systemic disease such as M.E.); the CDC did not take into account the very abnormal tests that were done on patients at that time, and instead passed things off as psychosomatic (substantiated from book, Osler's Web)
2. Open the way for patients to be appropriately treated for a very grave disease with potentially deadly complications. After 21 years of bringing this serious situation to the attention of the CDC, there is still no appropriate treatment protocol for this disease, and in contrast, there is danger in inappropriate psychiatric-oriented or exercise-oriented treatments that can further deteriorate the quality of life. See Drs. Vance Spence & Neil Abbott from MERGE (M.E. Research Group for Education & Support, for a better understanding and why such treatments are likely to be ineffective.
3. Discontinue the discrimination in both medical and public settings that makes patients denigrated or objects of disbelief & keeps many patients from receiving even the inadequate symptomatic treatment currently available. See Dr. Leonard Jason's attribution study - 2002 (attached) These show that on a practical clinical level, patients are treated with care and seriousness if the name Myalgic Encephalopathy is used, in contrast to the trivializing and lackadaisical treatment rendered for the name Chronic Fatigue Syndrome.
4. Energize and build interest in the medical research community, creating motivation by the study of a serious physiological disease with definitive criteria.
In direct contrast to the dominant medical community and public mind-set, Dr. Vance Spence, a medical doctor who suffers from M.E., has notably stated in the foreword to the book, "Shattered": "Only scientific research into the causes and treatment of M.E. can prevent experiences like those described in this book. Comparatively little biomedical research has been done due, in part, to the economics of medical research funding. In addition, M.E. has been subsumed by the all inclusive, heterogeneous diagnostic construct termed chronic fatigue syndrome (CFS). For most M.E. patients, the CFS term is insulting - akin to tuberculosis being renamed chronic cough syndrome - as it focuses on one symptom, "fatigue", which is the hallmark of a range of illnesses with different underlying physiological causes. Nevertheless, the construction of the CFS label has resulted in a disproportionate allocation of funding towards psychosocial models of the illness. It has been left to a small minority of pioneer researchers - funded by smaller charities to identify the physiological causes of M.E. and try to find a cure." Dr. David Bell, expert in both pediatric & adult and ME/CFS opened the most recent CFSAC meeting by reading this quote from same Foreword: "I can think of no other illness where such a powerful schism exists between those who suffer from it and those whose responsibility is to care for them."
The word "mysterious" is wrongly associated with ME despite a wealth of definitive scientific markers of abnormalities, which leads to confusion and poor medical care for patients:
*Abnormal brain SPECT & PET scans (Dr. Byron Hyde, The Clinical and Scientific Basis of Myalgic Encephalomyelitis/CFS)
*MRI findings consistent with organic brain syndrome--focal demyelination and/or edema typically in the subcortical areas (Dr. Anthony Komaroff)
*Disregulated HPA axis (Dr. Mark Demitrack, Dr. Anthony Komaroff)
*Disregulated antiviral pathway (Dr. Robert Suhadolnik)
*Cardiac abnormalities from viral invasion into the heart (Dr. Martin Lerner)
*Left-ventricular dysfunction following exertion and orthostatic stress (Dr. Arnold Peckerman)
*Cardiomyopathy, liver failure, pancreatic cancer, brain tumors & renal disease reported after 40 years of research in Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/CFS and Other Organ Pathologies (Dr. John Richardson)
*Mitochondrial encephalopathy (Dr. Paul Cheney & Dr. Shungu, using Magnetic Resonance Spectroscopy)
*Abnormal capillary flow due to high percentage of flat red blood cells instead of normal discoid shaped red blood cells (Dr. Les Simpson, rheologist from New Zealand)
*High percentage of patients with a viral load (HHV-6, EBV, cytomegalovirus) and/or Mycoplasma bacteria (Dr. Ablashi, Dr. Constance Knox, Dr. Carrigan, Dr. Nicholson)
*Low circulating blood volume (Dr. David Bell, Lyndonville, New York)
*Abnormal bicycle ergometry test with gas analysis indicating immediate movement to anaerobic threshold in M.E./CFIDS patients (Dr. Paul Cheney, who uses this test for his disability reports)
*Cardiomyopathy due to myofibers of virus (EBV or CMV) lodged in the heart (Dr. Martin Lerner)
*Head-up tilt test with haemodynamic instability (Dr. J. E. Naschitz)
*Abnormal T-helper 1/T-helper 2 Function Panel (Dr. Paul Cheney)
*Very low Natural Killer Cell Function by Lymphocyte Enumeration (Dr. Paul Cheney)
*Prolonged vasodilatory effect of acetylcholine in the microvasculature of M.E. patients (Dr. Vance Spence)
*Positive testing for Ciguatera Toxin Epitope (Dr. Yoshitsugi Hokama, Hawaii)
Finally, I request in your educational efforts that you discontinue the idea of "branding" the name CFS into the public mind, and instead reestablish the truth that Myalgic Encephalomyelitis is primarily a neurological disease (AM Ramsay, ME and Post Viral Fatigue States, 1988, Chapter 3 'The endemic form of the disease'--The clinical features of myalgic encephalomyelitis). Also, in regard to educational materials, we urgently need an updated education package which would include the problems faced by those with long-term ME/CFS and by homebound disabled patients. The current education package (like most research and materials) suggests patients stop exercise when they feel more fatigue; it does not teach doctors that all symptoms can worsen both during and after exercise/activity, not just the symptom fatigue, but also pain, complex Orthostatic Intolerance symptoms with abnormalities in blood pressure and heart rate, dizziness, cardiac and respiratory problems and visual problems.
In addition, the material does not mention those of us whose worst symptoms include dizziness. It assumes we all have the waxing/waning type illness but many of us have progressive illness and have been sick for a long time (Only 4-8% of patients with M.E. recover fully). All that is left out of education material. I would request you to instruct Dr. Reeves to include other patient (or consumer) representatives in CDC CFS committees or activities & in any discussion of research projects, and to immediately adopt the Canadian Consensus Criteria, a very useful document for the case definition which would save valuable time for the CDC instead of the CDC trying to design another flawed case definition.
Thank you for considering the requests that I have made. The patient community has waited decades for the above-mentioned actions to be taken. We need serious attention - now - in these areas.
Upon becoming completely disabled in 1998, I went to the Center for Special Immunology in Irvine, California, which treats people with M.E./CFS as well as AIDS patients. The personnel there said that people with M.E./CFIDS are much sicker and less functional than AIDS patients. Yet there is the abysmal discrepancy in treatment and research efforts in these two diseases.
Steven Du Pre
Vice-President of the California Capital Area M.E./CFIDS Association
(representing 40-150 M.E. patients)
Attachment: Jason Attributional Study
What's in a name? Plenty, when the subject is Chronic Fatigue Syndrome (CFS), according to DePaul University psychology professor Leonard Jason, whose recent study suggests that a name change would result in the much-maligned illness being taken more seriously. An international debate on the issue weighs whether or not CFS's weak moniker has hampered efforts to gain recognition and government support. Jason was joined by Sigita Plioplys, M.D., a psychiatry resident affiliated with the University of Illinois at Chicago and a research team from DePaul, which set out to determine if doctors' perceptions of the disease would change if the name were changed. The team found that when groups of medical trainees reviewed case studies of CFS patients that featured three different names for the disease, their perceptions did change depending on the name the illness was given. The names used in the study were: CFS, Florence Nightingale Disease (FN), named for the public health nurse who served during the Crimean War and was believed to have suffered from chronic fatigue; and Myalgic Encephalopathy (ME), the medically based term used to describe the condition.
More than 100 Chicago medical students and residents responded to questions pertaining to prognosis, correct diagnosis, illness cause and appropriate treatment. When asked to assess the likelihood that the patient would improve within two years, 42 percent of the medical trainees assessing the Florence Nightingale name, and a similar 41 percent of trainees evaluating the CFS name responded that it was likely or very likely that the patient would improve. However, only 16 percent of the students and residents who thought the condition was called Myalgic Encephalopathy felt it was likely or very likely that the patient would improve. This finding suggests that the doctors perceived the ME label as being indicative of a more chronic and debilitating illness as compared to the labels CFS and FN, Jason said. When asked what factors were most likely responsible for the person's illness, a greater proportion of medical trainees in the ME group attributed the illness to medical causes (39 percent) as compared with trainees in the FN (30 percent) and CFS (22 percent) groups.
"If you have a more medical-sounding name it does seem to change perceptions of the illness," said Jason. "This study provides a much-needed methodology for helping to change the name, and a way to go about it in a scientific, systematic way."
According to Jason, a more biological-sounding name for CFS will be beneficial because people tend to interact in a more sympathetic way when an illness has a name that communicates medical and scientific legitimacy. Also, the perception that CFS is a trivial illness has negatively affected government funding and support services. Jason indicated that more research and studies are needed to erase this myth.
Jason has conducted numerous studies on the prevalence of CFS and has written a book about the condition. Other study team members were Renee A. Taylor, a project director affiliated with DePaul's psychology department; Jennifer Shlaes, a graduate student of psychology at DePaul, and Zuzanna Stepanek, a volunteer research assistant and recent graduate of DePaul's bachelor's degree program in psychology.
The study, "Evaluating Attributions for an Illness based upon the Name: Chronic Fatigue Syndrome, Myalgic Encephalopathy and Florence Nightingale Disease," was reported in the July/August 1999 issue of the "Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) Chronicle." The findings of the study have bolstered Jason's confidence that CFS will have a new name in the future. "In the next year or two, a new name will come," said Jason. "A consensus is needed on what to change it to, and the scientific community will have to make that decision."
CFS is a chronic condition with symptoms that are severe, but often difficult to detect upon physical examination. They include fatigue, headaches and insomnia. For years the condition went un- or misdiagnosed because physicians weren't able to differentiate between common fatigue and CFS. Dr. Jason can be reached at 773/325-2018 for more information.
Also published here:
Am J Community Psychol. 2002 Feb;30(1):133-48 Evaluating attributions for an illness based upon the name: chronic fatigue syndrome, myalgic encephalopathy and Florence Nightingale disease.
Jason LA, Taylor RR, Plioplys S, Stepanek Z, Shlaes J., Center for Community Research, DePaul University, Chicago, Illinois 60614, USA. [email protected]
Dr. Gerberding's response, after encouragement from California Senator Dianne Feinstein:
Steven Du Pre
Vice-President of the California Capital Area M.E./CFIDS Association
Dear Mr. DuPre:
Thank you for your letter on behalf of you and 40 Myalgic Encephalomyelitis (ME) patients, regarding Chronic Fatigue Syndrome (CFS) and its relationship to ME. The synopsis of material that you provided is interesting and thought provoking.
As the scientific community a chance to deal with CFS and ME, it is clear that the two syndromes have overlapping features, as do all illnesses derived from definitions that continue to lack
definitive scientific bases. Classifications aside, ME continues to fall into that realm.
A component of ME that continues to elude efforts to consider it as the same illness as CFS is the presence of measurable neurological findings in individuals with classical ME. A careful reading of the 2nd edition of Dr. Ramsey's treatise entitled, "Myalgic Encephalomyelitis and Post-Viral Fatigue States" also identifies a number of other unique characteristics that differentiate CFS from ME. These differences contributed to the naming of the syndrome in 1988 and the subsequent receipt of an ICD code by a separate body. These observations aside, the many similarities between the two states warrant studies that compare individuals with each diagnosis using very specific entrance criteria.
The "Canadian Consensus Criteria of 2003" creates an interesting document. However, the effort is plagued with by the primary shortcoming of all definitions by committee efforts: a lack of irrefutable data upon which the definition is constructed. Verifying a definition and identifying comparable patients for additional study continues to be a major effort by our CFS Research Program. An example of the difficulty of studying diverse patients who at first glance appear to fulfill a definition is the list of bulleted 18 symptoms listed in your letter. Although each of these observations are interesting in their own right, there are equal or more studies addressing some of the issues which have not replicated the findings. For example, studies of the HPA axis and of the autonomic nervous function very greatly among the different reports. In addition and perhaps more importantly, if one takes a careful look at the wide variety of bodily systems included in the cited reports, it raises the question of how can all these diverse findings described the same illness? The answer is, in fact, they are not? No study has described even the presence of one such finding in their study subjects, and usually in small percentages of those studied.
The name of the syndrome remains an open question. The name is descriptive and in conjunction with other parameters does identify individuals with comparable problems, which in reality is the most important service that medicine as a discipline can currently provide. Once identified, patients should receive evaluations and care based on their own unique illnesses. The problems that arise reflect basic ones in the educational process and reimbursement structure of medical care today.
Additional studies, besides Jason et al., have identified a problem for physicians in dealing with illnesses that they have little ability to treat. Treatment of CFS and of ME is difficult primarily because the root cause in either case is unknown and it is fairly obvious that successful treatment of any illness with unknown etiology is difficult.
Education of the research community should be extended to the medical and allied health communities in general. Such an effort is ongoing and expanding via a cooperative effort between the CDC with the CFIDS organization. Recent experience has shown that the interest level of physical therapists and nurse practitioners/physician assistants in addressing the syndrome is quite high. As alluded to above in the current care paradigm, these individuals are likely to have more contact with patients than the primary medical provider, thus allowing more in-depth and patient-directed care. Unfortunately, the illness is not a "one-size-fits-all situation." For example, your dizziness appears to be an important component of your illness, however, it is an uncommon component in CFS in general and, when present, may have a variety of causes independent of the syndrome.
Your observations are important to the field and raise several interesting questions. Thank you for your interest in this important health issue and and I hope this information is helpful.
Yours sincerely,
Julie Louise Gerberding, M.D., M.P.H.
My counter-argument to Dr. Gerberding's response, which was not answered by CDC:
Dr. J. Gerberding, CDC Director
1600 Clifton Road NE
Mailstop D14
Atlanta, Georgia 30333
Dr. Gerberding:
I appreciate your response (which is attached for your easy access) to my letter received October 6, 2004, on behalf of the current collective over 150 Myalgic Encephalomyelitis patients in the Sacramento, California area.
I am interested in addressing the concerns you raised in your letter. You state that "a component of Myalgic Encephalomyelitis that continues to limit efforts to consider CFS as the same illness is the presence of measurable neurological findings in individuals with classical Myalgic Encephalomyelitis." You also stated that this and other unique characteristics that differentiate CFS from M.E. contributed to the naming of the syndrome in 1988. However, I would like to point out that one of the cardinal features of Myalgic Encephalomyelitis, neurological abnormalities, was reported to the original CDC representatives who came to Incline Village to confer with Dr. Cheney and Dr. Peterson; however, the committee that was formed by the CDC to produce a definition totally ignored these findings, which had been verified at the time by Dr. Sheila Bastien ("Patterns of Neuropsychological Abnormalities and Cognitive Impairment in Adults and Children") Further substantiation was provided by Ismael Mena, M.D., "Study of Cerebral Perfusion by NeuroSPECT in Patients with Chronic Fatigue Syndrome," The Cambridge Symposium on Myalgic Encephalomyelitis, 1990; 1: 21-22.
The epidemiologists from the CDC also failed to take into account the MRI scan abnormalities reported by Drs. Cheney and Peterson and verified by neuroradiologists in Reno and later substantiated by Dr. Komaroff at Harvard. In addition, see attached portion of Dr. Hyde's lecture at the Wisconsin conference which shows the inept CDC committee work on the definition of this disease as well as Dr. Hyde's clear presentation of the levels of disability in the disease, Myalgic Encephalomyelitis, by sophisticated use of brain SPECT scans. The point I am making here is that the CDC's scattershot definition and criteria plus the name CFS itself have brought in patient cohorts that muddy the waters, whereas by following the definitions of M.E. cited below, the true nature of this neuroimmune and cardiac disease becomes clear. Dr. Hyde says that there is a group of CFS patients who are misdiagnosed and actually have some other disease. He also notes that there is a group that has a wide range of pathologies that may be mistaken for M.E.
By viewing three definitions of Myalgic Encephalomyelitis, we can also see an answer to your question of "how can all of these diverse findings describe the same illness?"
Dr. Melvin Ramsay, pioneer UK researcher and clinician, posits this description of M.E.: 1) Muscle myopathy, which Ramsay describes as a delay in muscle recovery after exercise. 2) Circulatory impairment including intolerance to temperature extremes. 3) Cerebral (brain) dysfunction including problems with memory and concentration, sleep disturbances, noise intolerance, palpitations and tachycardia.
The cardinal features of M. E. as described in Dowsett and Welsby (1992) and Macintyre (1992) are considered to be:
1. Generalised or localised muscle fatigue following minimal exertion with prolonged recovery time.
2. Neurological disturbances.
3. Variable involvement of cardiac and other bodily systems.
4. An extended relapsing course with a tendency to chronicity.
5. Marked variability of symptoms in the course of a day.
Dr. Hyde's definition of M.E.: "M.E. is a measurable, diffuse post-encephalitic illness. The illness is characterized by (1) its acute onset, (2) the diffuse, non-focal persisting nature of the encephalopathy, and (3) the chronicity of the resulting symptoms. These symptoms consist of the rapid exhaustion or loss of stamina of motor, sensory, intellectual, and cognitive abilities. M.E. is of infectious/autoimmune origin and less commonly, a toxic/autoimmune origin. M.E. occurs in epidemics and sporadic cases."
[Note by Rich Van Konynenburg, Ph.D, who reported on the Dr. Hyde's lecture at the recent Wisconsin conference of medical practitioners specializing in M.E./CFS which was also attended by Dr. Reeves --  "Basically, what he's saying here is that M.E. starts with an inflammation of the brain that occurs rather suddenly. This initial inflammation usually results from an infectious/autoimmune process, but it can also be caused by a toxic/autoimmune process. This sudden, short-term inflammation is followed by a disorder of the brain that continues over time. This chronic disorder of the brain is not localized to a small part of the brain, but is spread out over large regions of the brain, and it leads to chronic symptoms that can involve essentially all the normal functions of the brain. M.E. occurs both in epidemic-type clusters of cases as well as cases that are occasional and isolated."] Dr. Hyde said that though the primary injury in M.E. is the diffuse CNS encephalopathy, the illness may cause or be associated with measurable dysfunction in end organs and various body systems. The most commonly injured end organs and systems are (1) the thyroid gland, (2) the cardiovascular system and (3) the immune system. The CNS dysfunctions are caused by widespread, measurable, diffuse micro-vasculitis affecting normal cell operation and maintenance. He went on to say that in M.E., "the brain changes are not progressive but of acute onset and relatively stable over a period of years."
"The evidence would suggest that M.E. is caused primarily by a diverse group of viral infections that have neurotropic characteristics and that appear to exert their influence primarily on the CNS arterial bed. The available brain technology limits the viral site of action to the capillaries and microarterial CNS bed. This diffuse vascular site of injury rather than a neurological cellular site of injury explains the natural history of ME-type illness." [Note by Rich--What he is saying here is that there is evidence that the causes of M.E. are any of a group of viruses that are able to infect the brain. By means of high-resolution SPECT scanning, he can tell that they mainly affect the small arteries and capillaries in the brain.] "It is also noted that many M.E. patients also have generalized arterial pathophysiology [Note by Rich--In other words, there are problems with the arteries all over their bodies.], causing various vascular problems that include in numerous patients: (1) insufficient blood pressure increase on exertion, (2) hyperelasticity and hyper-contractibility of arterial blood vessels, (3) various forms of arterial mediated vascular orthostatic pathophysiology [Note by Rich--In other words, they have difficulty standing up because of problems with their arteries] as demonstrated by Drs. David Streeten, David Bell, and Peter Rowe, and (4) cholinesterase dysfunction in the arterial wall, causing arterial elasticity dysfunction as demonstrated by Dr. Vance Spence at Dundee University, Scotland." [Note by Rich--Dr. Spence and his group have found that when they inject acetylcholine into the forearms of CFS patients using a special electrochemical technique, the arteries dilate more than normal, and stay dilated longer than normal.] Dr. Hyde noted that Dr. Erich Ryll had described the 1975 epidemic at the Mercy San Juan Hospital in Sacramento, California as epidemic vasculitis.
This goes a long way to in answer your questioning of how the 18 bulleted observations of diverse abnormalities listed in my first letter could be found in one patient. Actually I have all but three of these abnormalities, as do most all patients with the real disease, M.E., not unusual after viral or toxic assault and the resulting CNS Encephalopathy/Vasculitis. The three exceptions which I personally have not yet been tested for, are however found in a number of M.E. patients. I am fortunate not yet to have clear indications of the end-stage organ failures mentioned by Dr. Richardson & Dr. Hyde, and I have not been tested for enteroviral invasion, while the other two findings are difficult to obtain testing for the broad M.E. population: 1) the heart biopsy results by Dr. Lerner, and 2) the head-up tilt test. Dizziness is, too, a recognized symptom, but just as heart failure patients do not present with the same symptom set, neither do M.E. or CFS patients.
Attached is research included in the statement of the U.S.D.H.H.S.-appointed Name Change Working Group as well as specific cardiac & muscle myopathy research, which substantiate these numerous abnormalities in solid scientific studies.
Also, I am a little mystified about your criticism of the 2003 Canadian Consensus Criteria, specifically your comments that it:
1. ". is plagued by the primary shortcoming of all definitions by committee efforts" and;
2. ". a lack of irrefutable data upon which the definition is constructed."
Correlating with your comments above:
1. I posit first of all that the Canadian panel was not any old committee (as was the case with the CDC definition committees in 1988 and 1994, see quote below), but was rather comprised of internationally respected experts in the field of M.E./CFS - both hands-on clinicians and long-time researchers, including top-notch American doctors such as Dr. Klimas and Dr. Lerner among others.
By contrast, please note at the 2004 AACFS-Wisconsin Dr Reeves, one of the many authors of the Fukuda '94 definition, was very candid about the shortcomings of that CDC committee & the definition it produced: "The current case definition is what we have. It was basically, being an author I can do this in the crudest terms--a bunch of old cronies writing on their favorite symptoms... There were people in fact who deal with CFS patients for a living, but the definition was not based on empiric data."
I hope you will agree this demonstrates a primary shortcoming, emanating from the CDC, that is causing untold harm to millions around the world.
2. Addressing your need for irrefutable data, there are 237 references in the Canadian Criteria that cite reliable data. The attached citations from the Name Change Working Group provide additional reliable data (plus additional important cardiac & muscle myopathy abnormalities substantiated by research ).
3. The recent study by Dr. Leonard Jason ["Comparing the Fukuda et al. Criteria and the Canadian Case Definition for Chronic Fatigue Syndrome," J of Chronic Fatigue Syndrome, Vol. 12 Issue 1, pp. 37-52, 2004, E-mail: [email protected]] revealed that the Canadian Case Definition is a far superior tool in the clinical setting for diagnostic purposes (see attached abstract of study). Much of the inability of research studies to reach consistent results is due to the failure to work on research-based subsets under M.E./CFS, as well as the inherent problems of heterogeneity caused by the Fukuda criteria. Fatigue, as commonly understood, is not the central feature of the illness, but rather it's the relapsing of a number of neurological, circulatory, immune, musculoskeletal-weakness like symptoms, all of which are described under the Canadian Clinical Case Definition.
4. Australia has adopted the Canadian Clinical Case Definition for their country along with the name, Myalgic Encephalopathy/CFS. This would be an excellent & efficient example for us to follow. Finally, Dr. Carruthers has said that this document could be readily modified for research purposes. Therefore, this Canadian Criteria (which is actually by international consensus of experts) could provide both solid clinical and research definition documents in a short amount of time - notably without a lot of government expense.
Again, thank you for your letter, and for your consideration of these matters. I think it's possible to get these issues resolved in short order with your cooperation before more undue suffering and inhumane deprivations occur due to the loose 1994 Fukuda definition, and the name itself. A new name needs to be found for CFS (whether it be Myalgic Encephalomyelitis, Myalgic Encephalopathy, CNS Encephalopathy or CNS Vasculitis) because patients cannot get medical care and are routinely dismissed when they mention the name CFS. (reference: "Suffering, Science and Sabotage," by M. B. Yunus, M.D., Journal of Musculoskeletal Pain, Vol. 12(2) 2004), which shows in bright light the bias that medical practitioners continue to exhibit in their clinical treatment of M.E./CFS patients)
Steven Du Pre, Representing: Capital Area CFIDS/M.E. Assoc. & Sacramento Valley CFIDS/M.E. Assoc.
Portion of report on Dr. Hyde's comments at the conference:
When the original board met at the CDC in 1988 to establish a case definition for CFS, Dr. Hyde was in attendance, because those interested in this type of diseases were invited to come. He said that "it was obvious to those who had actually seen M.E./CFS patients that the vast majority of the people on the board were researchers who had never seen an M.E. patient clinically."
Dr. Hyde said that the definition this board developed totally warped the whole concept of M.E./CFS-type disease, because the authors introduced the word "fatigue" into the name. Fatigue can be produced by many things, and it is a totally undefinable term in his view.
Furthermore, in the 50 epidemics up to that time, fatigue had only occurred in one. What actually did occur in these epidemics again and again was central nervous system (CNS) derangement: sleep dysfunction, cognitive problems, and in general, difficulties with any tasks the brain is required to perform.
According to Dr. Hyde, the second factor that came into the picture in 1988 and was perpetuated as well in the development of the revised 1994 Fukuda et al. case definition process as well those carried out in other countries, was that they brought in more psychiatrists. The overall result was that the definitions were developed primarily either by epidemiologists who were in his view forced by the government to go and start looking at these patients and produce a definition, or by people who did not believe that there was any physical thing wrong with any of the people who had what they called CFS.
Dr. Hyde said that at a meeting initiating the development of the 1994 definition there was not a single clinician on the entire board, with one exception, and he therefore got up and said, "Why don't you put some people on this board who have actually seen patients?" He said they accommodated by adding one more who had. Dr. Hyde said the people on the board were brilliant, but they had never seen a case of CFS. According to Dr. Hyde, bringing in so many physicians who had never actually seen CFS patients, and particularly psychiatrists, who wanted to say that these patients had depression or anxiety or some other psychiatric problem, and trying to accommodate these extremes in the definitions destroyed the reality in the definitions that resulted.
Dr. Hyde quoted a 1993 paper by Dr. William Reeves of the CDC, to wit, "Chronic fatigue syndrome has no confirmatory physical signs or characteristic laboratory abnormalities, and the etiology and pathophysiology remain unknown." In Dr. Hyde's view, any reasonable physician who did not actually deal with CFS would conclude from reading this that CFS had to be a form of psychiatric or somatizing illness. He said that we need to redefine what is going on, and that there is a lot of good evidence with which to do so.
Recovery of ME Patients
Dr. Hyde distinguished the following three types of ME, based on his SPECT observations
"Type I ME: Patients who demonstrate primarily a mild persisting encephalopathy of only one of the brain hemispheres are most likely to have some chance of recovery.
"Type II ME: Patients who demonstrate an encephalopathy involving both cerebral hemispheres rarely or never recover.
"Type III ME: These patients have both a bilateral cortical hemisphere and a subcortical encephalopathy. Type III patients have the most severe and most chronic form of illness and demonstrate the largest degree of increased end-organ pathophysiology."
Dr. Hyde emphasized that the changes he observes on the SPECT scan in ME patients are not found in healthy people, and that they are clear evidence of disease.
He believes that the causes of these changes could be viral, chemical, or autoimmune agents.
He further believes that "These central nervous system changes can potentially affect other body organs and systems that are controlled by the specific CNS areas injured, and that these organ and system changes are also measurable."

Abstract of Dr. Leonard Jason study:
Comparing the Fukuda et al. Criteria and the Canadian Case Definition for Chronic Fatigue Syndrome Journal: J of Chronic Fatigue Syndrome, Vol. 12 Issue 1, pp. 37-52, 2004 ISSN: 1057-3321 Pub Date: 10/14/2004 Authors Leonard A. Jason PhD, DePaul University, Center for Community Research, Chicago, IL 60614, E-mail: [email protected]
Because the pathogenesis of Chronic Fatigue Syndrome (CFS) has yet to be determined, case definitions have relied on clinical observation in classifying signs and symptoms for diagnosis. The selection of diagnostic signs and symptoms has major implications for which individuals are diagnosed with CFS and how seriously the illness is viewed by health care providers, disability insurers and rehabilitation planners, and patients and their families and friends. Diagnostic criteria also have implications for whether research based on varying definitions can be synthesized.
The current investigation examined differences between CFS as defined by Fukuda et al. (1994) and a set of criteria that has been proposed for a clinical Canadian Case definition.
There were twenty-three participants who met the Canadian criteria, 12 in the CFS (Fukuda et al. (7) criteria) group and the 33 from the chronic fatigue (CF)-psychiatric group. Dependent measures included: work status, psychiatric comorbidity, symptoms, and functional impairment (measured by the Medical Outcomes Study). People meeting the Fukuda et al. and Canadian criteria were compared with people who had a chronically fatiguing illness explained by a psychiatric condition. Statistical tests used included binomial logistic regression and analysis of variance.
The Canadian criteria group, in contrast to the Fukuda et al. criteria group, had more variables that statistically significantly differentiated them from the psychiatric comparison group. Overall, there were 17 symptom differences between the Canadian and CF-psychiatric group, but only 7 symptom differences between the CFS and CF-psychiatric group.
The findings suggest that both the Canadian and Fukuda et al. case definitions select individuals who are statistically significantly different from psychiatric controls with chronic fatigue, with the Canadian criteria selecting cases with less psychiatric co-morbidity, more physical functional impairment, and more fatigue/weakness, neuropsychiatric, and neurological symptoms.

From Recommendations of the Name Change Workgroup Presented to the DHHS Chronic Fatigue Syndrome Advisory Committee
The number of symptoms reported by patients with the syndrome is very large (4). However, most of the commonly reported symptoms are associated with or may be indicative of an aberration or dysfunction of the neurologic, neuroendocrine, and/or immunologic systems. The following selected scientific publications provide a sound basis for a new name that reflects common symptoms associated with these systems. The articles were selected because they have withstood scientific scrutiny and represent critical findings. While other publications are available, the chosen articles are widely respected, cited, and felt to be representative of the current understanding of the science. For purposes of this document, the articles have been categorized into their relevant subsections pertaining to each of the body systems.
A. Neurologic System
Autonomic nervous system (including orthostatic intolerance) Several authors have published findings demonstrating that some of the symptoms seen with this syndrome are associated with autonomic nervous system dysfunction, predominantly blood pressure control.
Bou-Holaigah I, Rowe PC, Kan J, Calkins H. The relationship between neurally mediated hypotension and the chronic fatigue syndrome. JAMA 1995; 274:961-967.
Schondorf R, Freeman R. The importance of orthostatic intolerance in the chronic fatigue syndrome. 1999 Am J Med Sci 1999;317(2):117-123.
Freeman R, Komaroff A. Does the chronic fatigue syndrome involve the autonomic nervous system? Am J Med 1997;102:357-364.
Neuroendocrine System
The best studied evidence of neuroendocrine dysfunction involves the hypothalamic-pituitary-adrenal axis.
Demitrak MA, Dale JK, Straus SE, et al. Evidence for impaired activation of the hypothalamic-pituitary-adrenal axis in patients with chronic fatigue syndrome. J Clin Endocrinol Metab 1991;73:1223-1234.
Scott LV, Medbak S, Dinan TG. Blunted adrenocorticotropin and cortisol responses to cortocotropic-releasing hormone stimulation in chronic fatigue syndrome. Acta Psychiatr Scand 1998;97:450-457.
Neurocognitive Problems
Neurocognitive symptoms are reported with relatively high frequency in the syndrome. In addition to problems with memory and concentration, information processing functions appear to be abnormal. Many meritorious articles have been published, but at least one seems to be scientifically robust and has not been substantially challenged by other publications.
DeLuca J, Johnson SK, Ellis SP, Natelson BH. Cognitive functioning is impaired in patients with chronic fatigue syndrome devoid of psychiatric disease. J Neurol Neurosurg Psychiatry 1997;62:151-155.
 B. The Immune System
Several articles have been published investigating the relationship between the immunologic system and chronic fatigue syndrome. The best validated work and most consistent findings demonstrate decreased function of natural killer cells and reduced responses of T cells to mitogens and other specific antigens. The literature also supports evidence of chronic immune activation in CFS, with increasing emphasis on cytokine dysregulation.
 Caligiuri M, Murry C, Buchwald D, et al. Phenotypic and functional deficiency of natural killer cells in patients with chronic fatigue syndrome. J Immunol 1987;139:3306-3313.
Klimas NG, Salvato FR, Morgan R, Fletcher MA. Immunologic abnormalities in chronic fatigue syndrome. J Clin Microbio 1990;28:1403-1410.
Patarca R, Klimas N, Sandler D, Garcia MV, Fletcher MA. Interindividual immune status variation patterns in patients withchronic 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.
Sudaholnik RJ, Peterson DL, O'Brien K, Cheney PR et al. Biochemical evidence for a novel low molecular weight 2-5A-dependent Rnase L in chronic fatigue syndrome. J of Interferon&Cytokine research. 17(7):377-85, 1997.
(Additional studies on serious cardiac & muscle myopathy abnormalities in M.E./CFS)
Lerner AM, Dworkin HJ, Sayyed T, Chang CH, Fitzgerald JT, Beqaj S, Deeter RG, Goldstein J, Gottipolu P, O'Neill W. Prevalence of abnormal cardiac wall motion in the cardiomyopathy associated with incomplete multiplication of Epstein-barr Virus and/or cytomegalovirus in patients with chronic fatigue syndrome. In Vivo. 2004 Jul-Aug;18(4):417-24.
Peckerman A, LaManca JJ, Dahl KA, Chemitiganti R, Qureishi B, Natelson BH. "Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome." Am J Med Sci. 2003 Aug;326(2):55-60.
Arnold Peckerman, Rahul Chemitiganti, Caixia Zhao, Kristina Dahl, Benjamin H. Natelson, Lionel Zuckier, Nasrin Ghesani, Samuel Wang, Karen Quigley and S. Sultan Ahmed. "Left Ventricular Function in Chronic Fatigue Syndrome (CFS): Data From Nuclear Ventriculography Studies of Response to Exercise and Postural Stress," Findings presented at the American Physiological Society conference, Experimental Biology 2003, being held April 11-15, 2003, at the San Diego Convention Center, San Diego, CA
Lerner, A. M., Goldstein, J., O'Neill W., et al. "Cardiac involvement in patients with chronic fatigue syndrome as documented with Holter and biopsy data in Birmingham, Michigan, 1991-1993." Inf Dis in Clin Pract, 1997; 6:327-333.
Muscle myopathy: Muscle Metabolism/Mitochondrial Myopathy Behan, W. M., More, I.A., Behan, P.O. "Mitochondrial abnormalities in the postviral fatigue syndrome." ACTA Neuropathol (Berl), 1991;83(1):61-5.
Zhang C., Baumer A., et al. "Unusual pattern of mitochondrial DNA deletions in skeletal muscle of an adult human with chronic fatigue syndrome." Hum Mol Genet, 1995 Apr.; 4(4):751-4.
McCully K.K., Natelson B.H., et al. "Reduced oxidative muscle metabolism in chronic fatigue syndrome." Muscle Nerve, 1996 May;19(5):621-5.
Behan, W.M.H., Holt, I.J., et al. "In vitro study of muscle aerobic metabolism in chronic fatigue syndrome." JCFS, 5.1(1999):np. Lane, R. J., et al. "Heterogeneity in chronic fatigue syndrome: evidence from magnetic resonance spectroscopy of muscle." Neuromuscular Disorders 83 (4):204-209.
Lane, R.J., et al. "Muscle fiber characteristics and lactate responses to exercise in chronic fatigue syndrome." J of Neurol, Neurosurgery, and Psychiatry 64(3):362-367.
McCully, K.K., Natelson, B.H. "Impaired oxygen delivery to muscle in chronic fatigue syndrome." Clin Sci (Colch) 1999, Nov; 97(5):603-8;discussion 611-3.
Kuratsune H., Yamaguti K., et al. "Acetylcarnitine deficiency in chronic fatigue syndrome." Clin Inf Dis 1994; 18(suppl1):62-67. Griggs R.C., Karpati G. "Muscle pain, fatigue, and mitochondriopathies." NEJM 1999; 341:1077-78.
Manfredi, G., Beal M.S. "The role of mitochondria in the pathogenesis of neurodegenerative diseases." Brain Pathol 2000 Jul; 10(3):462-72.
LaManca, JJ., Sisto, SA., DeLuca., Johnson, SK., Lange, G., Pareja, J., Cook, S and Natelson, BH. Influence of exhaustive treadmill exercise on cognitive functioning in chronic fatigue syndrome. American Journal of Medicine, 1998, 105, 3A, 59s-65s
Paul, L., Wood, L., Behan, WMH and Maclaren, WM. Demonstration of delayed recovery from fatiguing exercise in chronic fatigue syndrome. European Journal of Neurology, 1999, 6, 63-69.

Effective IBS therapies

Peppermint oil, soluble fiber, and antispasmodic drugs can indeed help people with irritable bowel syndrome
About 10 to 15 percent of people in North America have IBS, and it's twice as common in women. However, only about one-third of people with the intestinal disorder seek treatment.

The exact cause of IBS remains unknown

Medical science has tended to ignore IBS; it wasn't appreciated how much of an impact it can have on a patient's quality of life," he says.

team looked at three treatments -- soluble fiber, peppermint oil, and antispasmodics, which are drugs that relax the smooth muscle in the gut and relieve cramping -- and found that they were all more effective than a placebo, according to the report in the British Medical Journal.

But not all fiber is the same. The soluble fiber ispaghula husk, which is also known as psyllium and found in some bulk laxatives, significantly reduced symptoms of IBS, particularly constipation; insoluble fiber, such as bran, did not relieve symptoms.

Several antispasmodic drugs helped prevent IBS symptoms, particularly diarrhea. The most effective one was hyoscine, which is sold without a prescription in the United States.

Although peppermint oil was found to be the most effective of the three therapies, more data are needed, cautions Quigley.

Dr. Wilson adds that such treatments are best for patients with mild or moderate IBS. However, in her practice, she's found that prescription medications need to be used for severe cases that don't respond to these treatments.



Friday, November 14, 2008

Reiki NOT Useful for Fibro

Reiki for the Treatment of Fibromyalgia: A Randomized Controlled Trial.
J Altern Complement Med. 2008 Nov 8. [Epub ahead of print]
Assefi N, Bogart A, Goldberg J, Buchwald D.
Department of Medicine, University of Washington, Seattle, WA.,
Department of Obstetrics and Gynecology, University of Washington, Seattle, WA.
PMID: 18991519
Objective: Fibromyalgia is a common, chronic pain condition for which
patients frequently use complementary and alternative medicine,
including Reiki. Our objective was to determine whether Reiki is
beneficial as an adjunctive fibromyalgia treatment.
Design: This was a factorial designed, randomized, sham-controlled
trial in which participants, data collection staff, and data analysts
were blinded to treatment group.
Setting/location: The study setting was private medical offices in
the Seattle, Washington metropolitan area.
Subjects: The subjects were comprised 100 adults with fibromyalgia.
Intervention: Four (4) groups received twice-weekly treatment for 8
weeks by either a Reiki master or actor randomized to use direct
touch or no touch (distant therapy).
Outcome measures: The primary outcome was subjective pain as measured
by visual analog scale at weeks 4, 8, and 20 (3 months following end
of treatment). Secondary outcomes were physical and mental
functioning, medication use, and health provider visits. Participant
blinding and adverse effects were ascertained by self-report.
Improvement between groups was examined in an intention-to-treat analysis.
Results: Neither Reiki nor touch had any effect on pain or any of the
secondary outcomes. All outcome measures were nearly identical among
the 4 treatment groups during the course of the trial.
Conclusion: Neither Reiki nor touch improved the symptoms of
Energy medicine modalities such as Reiki should be
rigorously studied before being recommended to patients with chronic
pain symptoms.
* * *
So many things are touted as being helpful to CFS/fibro patients, when they're really only beneficial to the practitioner's bank account.
Certainly, if you find that Reiki helps you, continue to use it, but it always helps to ask in a support group whether anyone has found useful the new therapy you're thinking of trying, and to check Co-Cure's website for articles like this.
At a health fair, I had the intriguing opportunity (for free) to experience non-force chiropractic.  The practitioner's hands were placed lightly on the site of my pain and I was instructed to breathe deeply while focusing good thoughts on that spot.  It didn't help anywhere near as much as the traditional chiropractic that actually gets my spasming spine back into alignment.  The aromatherapy was nice, the gentle touch of a caring person was nice, but I can burn scented candles and curl up with a vibrating massage pad (a/k/a The Cat) without paying a lot of money for a session of non-force chiropractic, and achieve results at least as good.  Maybe better, because the cat touches the painful area for hours on end, not just a few minutes.
What I do find of some use is FibroSoak and FibroRub from  -- they're a local company, and in an emergency Susan's even personally delivered to my house (a mile or two from the store) so I wouldn't have to wait a couple days for the Postal Service to get it here.  Susan also has bath salts and massage oil called Lullaby; when I first started having the sleep problems that resulted in this relapse, I went to her for help, she massaged a bit of the oil into my hand, and it was a darn good thing I was taking the trolley home, because I would've fallen asleep at the wheel if I were driving!  It wasn't a cure-all but if you're only sleeping 5-7 AM, anything that can buy you a little extra sleep now and then is a godsend.  If you can get to the store in person, they have some nice gift items and unique jewelry.  (No affiliation except a very satisfied customer.)
I'm always happy to get blog comments about things you've tried that either did or didn't work for you.


Help us earn money for Research (and it won't cost you a cent)

Gail from NCF writes:
> We've recently received another quarterly check from and want to
> thank all those who do their shopping online and go through the mall at
> iGive
> so  that a portion of all their purchases will go directly toward funding
> research via The National CFIDS Foundation, Inc.
Since we're talking about things that benefit research without costing you an extra cent, let me remind the oldies and inform the newbies about two search engines that donate to CFS charities for every search performed:
I've had both of them turn up things that other web searches don't, so I'll recommend them highly!  Bookmark them, put them in your toolbar for easy access, use them as often as possible.


Dan Peterson speaks Wednesday in Santa Barbara

Chronic Fatigue Syndrome Expert to Speak November 19th

The physician who first described CFS will lecture on the role of smoldering infections in a subset of CFS patients

Daniel Peterson, MD, Medical Director of the Whittemore Peterson Institute and past president of the International Association for Chronic Fatigue Syndrome (CFS) will lecture on the role of viruses such as parvovirus B-19, enterovirus, Human Herpesvirus-6 (HHV-6) and Epstein Barr virus (EBV) in patients with CFS on Wednesday, November 19th at 5:30 PM.

The event will be held at the Montecito Country Club, 920 Summit Road in Santa Barbara. ProHealth founder and patient advocate Rich Carson will introduce Dr Peterson. Due to limited seating please, reserve a seat by calling 805-969-1174 or by emailing [email protected].

Dr. Daniel L. Peterson and the town of Incline Village, Nevada became the focal point of an epidemic outbreak caused by an unknown illness in 1984. The condition which eventually became known as Chronic Fatigue Syndrome has remained a challenging medical enigma to researchers and clinicians ever since. Peterson first noticed the "outbreak" of CFS which was promptly dubbed the "yuppie flu" when it caught the world's attention. Peterson has quietly continued his research in the field, participating in over 17 research studies and several drug trials in search of a cure.

Several recent studies have linked common viruses to CFS. John Chia, MD, of Lomita, California recently published evidence of chronic enterovirus infections in CFS patients, but says that you can't find evidence in the blood (where most researchers prefer to look). Instead, he says, you need to look in brain and gut tissues. For example, he found much higher levels of enterovirus proteins in the stomach antrum biopsies of CFS patients compared to controls. Jose Montoya of Stanford University has also described success in administering antivirals to CFS patients with elevated antibodies to HHV-6 and EBV. Brigitte Huber of Tufts University School of Medicine has found that viruses like EBV and HHV-6 can also reactivate ancient retrovirus embedded in the human genome in subsets of chronic fatigue syndrome (CFS) and multiple sclerosis (MS) patients who were born with the retrovirus, HERV K-18.

There is no known cure for CFS. Recently, Roche sponsored a placebo-controlled trial by a Stanford University group on the use of the antiviral drug Valcyte for patients with CFS. Eli Lilly is also conducting a trial of the antidepressant Cymbalta for CFS but results have not been announced for either trial.

The event is sponsored by the HHV-6 Foundation ( and the Santa Barbara CFS Support Group ( Admission is free, although donations are encouraged.

The Santa Barbara CFS Support Group
The Santa Barbara CFS Support Group was formed recently by CFS patients to sponsor lectures on the latest research and potential treatments for CFS.

The HHV-6 Foundation
The HHV-6 Foundation encourages scientific exchanges and provides grants to researchers seeking to increase our understanding of HHV-6 infection in a wide array of central nervous system disorders and is based in Montecito.



HIV "cured" with bone marrow transplant

Marrow transplant may have cured AIDS, German doctors say
BERLIN - An American man who suffered from AIDS appears to have been cured of the disease 20 months after receiving a targeted bone marrow transplant normally used to fight leukemia, his doctors said Wednesday.
While researchers — and the doctors themselves — caution that the case might be no more than a fluke, others say it may inspire a greater interest in gene therapy to fight the disease that claims 2 million lives each year. The virus has infected 33 million people worldwide.

Dr. Gero Huetter said Wednesday his 42-year-old patient, an American living in Berlin who was not identified, had been infected with the AIDS virus for more than a decade. But 20 months after undergoing a transplant of genetically selected bone marrow, he no longer shows signs of carrying the virus.

* * *
I wonder if the same thing would work for the immune deficiency portion of CFS?



Cortisol, Cortisol, Cortisol! - the Cortisol Edition

Cortisol is the most studied substance in the disease. Because cortisol plays a role in so many facets of the body from the stress response to immune regulation, abnormal cortisol levels could cause alot of mischief. But do they in ME/CFS?

In this newsletter we go from Dr. Holtorf's claim that cortisol levels are lower than we think to CDC findings suggesting that low cortisol may be the straw that breaks the camel back in women with CFS (but not men!). But what to do about these low cortisol levels? That's where the real controversy begins.

Check it out in the September Edition of Phoenix Rising
* * *
Cortisol readings are the proof that CFS is not depression -- the results are off in opposite directions.
If your doctor persists in claiming that you have depression and not CFS, do whatever it takes to get a cortisol test to prove him wrong.
Cortisol is one of the chemicals that rises and falls throughout the day, and is involved in the sleep process -- if it's at the wrong level when you go to bed, you're not going to go to sleep until it cycles to where it should be to induce sleep.
My cousin's husband is a doctor in another country where they prescribe natural treatments. His recommendation was to try Enada NADH, available at GNC. It did give me a bit of a bounce at a time when my own doctors were playing games with who "could" write prescriptions and therefore no one was giving me anything; it was the one thing in that time frame that gave me a bit of improvement while I was going downhill fast from sleeping 2 hours a night. I've always suspected the reason the natural treatments weren't working was that I was going deteriorating faster than they could undo; I should probably try that regimen again now that I'm sleeping.

Thursday, November 13, 2008

Reporting Adverse Reactions to Non-Drug Treatments

Tom's comments are worth reading even after the deadline for making your own comments.
[The following is a quick submission I have just sent in on the Terms of
Reference for the APPG Inquiry into NHS Service Provision for ME and CFS.
Details of the draft Terms of Reference and how to make a submission are at:  - people need to get in
quick as Friday, November 14 is the deadline.
I'm a bit sleepy so hope this all makes sense (incl. my submission).  I
thought I should send this out now.  It makes some general points. Tom]

One suggestion that occurred to me reading the terms of references:

- what facilities are there for reporting adverse reactions to treatments
including non-drug treatments such as Graded Exercise Therapy (GET) or
Cognitive Behavioural Therapy (CBT).

These are the recommended treatments by NICE, put on the level as drugs (in
fact it could be said that they are resulting in people not having access to
other drugs - drugs which can be hard to bring to market as they have to go
through all sorts of testing which can cost millions; it is questionable
whether if CBT or GET was a drug whether it would have got to market now and
been seen by NICE as effective e.g. what objective improvements have been
found in RCTs?  What dosages should be used and not used?  What are the
contra-indications, special precautions, interactions, etc?).

Anyway, even when a drug has gone through safety trials, etc, adverse
reactions are still relevant after that.  Drugs can often be
taken off the market years after they were first "released" when it is
discovered that they can cause adverse reactions.

In the case of Graded Exercise Therapy, surveys by ME organisations tend to
find 30-50+% of people say they have been made worse by Graded Exercise
. These aren't just old survey results.  For example, AfME/AYME
produced a major survey this year which found that of 594 people who had
done Graded Exercise Therapy in the last three years, 34.01% had said they'd
been made worse by it.*

It has sometimes been claimed that if people do it with an "NHS specialist"
it's relatively safe.  However the figure for that group in the recent
AfME/AYME survey wasn't much different - 31% had been made worse by doing
GET under an "NHS specialist"
in the last three years.

For a drug, that is a huge figure - almost certainly it would be taken off the market in such a situation.
The level of adverse reactions patient organisations learn about in their
surveys seems to be ignored by most in "establishment" medicine.  They
generally seem to claim only RCTs are relevant.

Of course, it's easy to point out flaws in a situation.  Finding a solution
can be more difficult.

One suggestion I would have is that the Yellow Card Scheme which was
extended to patients in recent years could also be extended to any
treatments, including non-drug treatments like Graded Exercise Therapy and
Cognitive Behaviour Therapy.

If that was not possible for every condition, that there would be some
independent place where people with ME or CFS could report such adverse
People wouldn't have confidence in a adverse-reaction-to-drugs scheme if one
could only report the adverse reactions to the drug company. Similarly, I
think people should be able to report adverse reactions in other places
apart from the clinics promoting CBT and GET who may have a vested interest
in trying to persuade a patient not to record an adverse reaction (they
might try to put the patient off) or might not do much with the information.
A patient could also feel intimated themselves from reporting an adverse
reaction in such a situation.

I don't think reporting should be restricted to people who do it "under an
NHS specialist" (although a question on the form could ask this).
Treatments such as Graded Exercise Therapy, are available "over the
counter".  And with them regularly been recommended to doctors and patients
in the media or if they look at official internet sites, many will "try them
at home".

Treatments like GET would not necessarily have to be banned following this
information but useful information could be learned from it.

Currently proponents such as Peter White seem to completely ignore reports
from patient organisations that people can have adverse reactions.  I don't
recall him ever mentioning warnings, when talking about graded exercise
therapy, especially I don't recall him or virtually anyone involved in the
clinics mentioning patients being made permanently worse from the treatment.
Peter White is important because he and his team, as well as covering a
large catchment area, seem to be involved in education/training of
clinic/services staff around England on Graded Exercise Therapy .

Anyway this has doubled up as a bit of a submission but your team could just
look in to the issue generally e.g. what facilities are there for reporting
adverse reactions, what is done with the information (e.g. is it collated
nationally? Is it analysed? Etc).

Anyway, didn't mean to ramble on so much.

Thank you for your time.

Tom Kindlon

*Personally I think this percentage may even turn out to be an underestimate
- some of the people in this group are probably currently doing it and have
been convinced by the therapist that the symptoms they are experiencing are
nothing to worry about; it might take them a while to realise than in some
cases they may turn out to be more long-term
; similarly some of the people
who say they are helped may realise that they may be able to go for a longer
walk but they have to avoid a lot of other things in their life which they
may be able to do temporarily; however in the long-run, they won't be able
to put their life on hold and may find that it hasn't made much of a
difference at all.  I have seen this happen with the responses to our
membership survey over the years where results can vary from one year to the



Meeting the wrong guys

Maybe God wants us to meet a few wrong people before meeting the right one, so that when we finally meet the right person, we will know how to be grateful.
My cousin sent me this as part of a list of inspirational sayings, and it's true.
Roughly 3/4 of CFS patients have had bad experiences with doctors.  We're disbelieved, verbally abused when we say the wrong pills didn't help, given inaccurate psychiatric diagnoses, and labelled as "difficult patients" when we "refuse to get better".
And finally, you get to "the right person", the doctor who listens and asks questions so he can make the right diagnosis, is willing to read what the experts say to be sure you're getting the right pills, and you're grateful for him.
My problem is that I'd already had "the right one", a wonderful female doctor who treated me like an equal and took me seriously.  She died suddenly, the well-recommended female doctor I'd hoped to see was not taking new patients, and I wound up assigned to one of the most misogynistic males I've met in the post-feminist era.  I knew how a good doctor treats patients, and this wasn't it. 
I saw some of his colleagues and they weren't "the right one", either; the last straw was when I tried to refuse a prescription for something I'd been told to never take, and was repeatedly told "it'll be fine". I'd already had a severe reaction to something in that family; if I'd been fool enough to take it, I could've died.  He wouldn't change it, and I saw in his attitude "you're poor, you're stuck with me". No, I wasn't; I'm not an indigent, I have real insurance, I can go anywhere I want ... and I did. He was apparently offended to find out I wasn't going to be bullied into doing what he wanted (at great risk to my health) and had escaped from his control.  I take it he had a few more psychotropic drugs he wanted to try on me hoping to make me a more tractable and compliant second-class citizen who'd go along with whatever he wanted to do to me and forget about the repeated malpractice committed by multiple members of his medical group.
Unfortunately, there are those who think that any disabled person should be infinitely grateful that any doctor is willing to see them.  While that may be true of those on Medicaid, where reimbursement rates are much lower than the doctor's normal fee, it should not be the case for those of us who have private insurance and are paying full freight.  Seeing me is no different from seeing an employed patient; maybe better, because until I reach my deductible (which is ridiculously high), I pay cash for the appointment, the doctor doesn't have to wait weeks for the HMO to send a check for the difference between the $10 co-pay and the $100 total.
My current doctor is well aware who's paying his bill, and treats me like the paying customer I am rather than a charity case who has no choice in which doctor I see.  Moreover, knowing that I don't have prescription coverage and do have a lot of allergies, if he wants to try a new medication, he gives me samples (if he has them) so that I can find out whether this is something I can take safely before I have to spend my hard-earned money on it.  Having spent hundreds of dollars on prescriptions where I only took one or two before concluding this was another thing that caused intolerable side effects, I really appreciate the chance to "try before you buy"; by the time I spend the money, I know it's going to work.
I do very much appreciate the doctors who treat me like an intelligent person who knows something about my own illness.  But appreciating the jewels does not prevent me from saying that there are some doctors who aren't worth being grateful for.  They may deign to give me a few minutes of their time, but if they're doing more harm than good, insisting that only a doctor knows anything, they don't deserve gratitude.  They deserve to be exposed as disrespectful quacks that patients would be well-advised to steer clear of.


Wednesday, November 12, 2008

More on CDC and Research

In addition to a link to Kim's testimony, there are also links to the following:
Transcripts of Other Presentations Submitted as Public Testimony Include:

A proposal by CFIDS Assoc. Scientific Director Suzanne D. Vernon outlining the benefit of a coordinated national CFS research network of government, academic, and private entities, guided by a clear understanding of the CFS research priorities, and sharing data, findings, and specimens.

Researcher Marian Dix Lemle's explanation of her intriguing hypothesis that dysregulation of hydrogen sulfide metabolism in the cells' energy generating mitochondria plays a role in the multi-system disturbances of ME/CFS.

CFS patient Brian Smith's testimony regarding the economic burden patients bear when unable to work, and the need to explore difficulties associated with efforts to obtain Social Security Disability benefits (in stark contrast to other disabilities such as MS or limited vision).
* * *
The determination of eligibility for SSDI is supposed to be Functional Capacity, i.e., how much you can actually do. Unfortunately, many CFS patients find themselves rejected because of pre-conceptions about the disease; I've been in the system for more than 8 years and no one has ever sent me for a Functional Capacity Evaluation. As long as I don't have it, the judge can claim that I'm exaggerating my symptoms and their effects.

Meanwhile, if you have other diseases, with scarier names, you'll get approved on the spot, even if you're still able to work.
And for things like blind/deaf/wheelchair, you don't have to prove a darn thing, other than you're blind/deaf/use a wheelchair! I know people with all those conditions who are well-employed, yet it's an automatic assumption by SSDI that they're unemployable, no questions asked, while CFS patients who are almost bedridden find themselves told "just go back to work".
This discrimination needs to be exposed and investigated. If it's gotten to the point that you're before a judge, you should have had a Functional Capacity Evaluation, no excuses.

New URL for Cheney on Cardiology

I noticed that the old link for this article didn't work, so here's the one that works today (DFWCFIDS has a bad habit of rearranging their entire website on a regular basis so that links become outdated).
If the above link doesn't work, go to and search for Cheney. 

Cheney explains WHY you feel better lying down than sitting or standing, and what test will prove it's not just a figment of your imagination.
It's worthwhile reading for both you and your doctor!

Tuesday, November 11, 2008

A Myelitis by Any Other Name

CHRONIC FATIGUE SYNDROME: THE HIDDEN POLIO EPIDEMIC by Dr. William Campbell Douglas (Second Opinion Newsletter)
Annals of the New York Academy of Sciences, which strongly indicate that polio did not go away at all, but now manifests itself as chronic fatigue syndrome.
...polio had changed and was called something else by the neurologists. I was intrigued, but I quickly discarded the idea -- where were the thousands of paralyzed kids, the iron lungs, the shriveled limbs? I had not seen a case of active polio (I thought) in my entire career. Then I heard that the neurologists were calling chronic fatigue syndrome (CFS) "Myalgic Encephalomyelitis." That's funny I thought, why are they calling it "myalgic," which means muscle; "encephalo," which means brain; and "myelitis," which means inflammation of the covering of the nerves?
Being slow, I just decided they gave it this fancy moniker because it sounded more scientific than chronic fatigue syndrome.
And then, almost like a divine revelation, I saw the report in the New York Academy of Sciences and said: "Of course, why didn't I think of that--chronic fatigue syndrome is the modern form of poliomyelitis."
When the Coxsackie viruses were first isolated from CFS patients, it wasn't realized that we were simply dealing with a new form of polio. This new polio was caused by the replacement of the polio viruses with their brothers, the Coxsackie viruses. As the researchers didn't get the connection at first, these new polio cases were labled "post-polio syndrome," "chronic fatigue syndrome," and "myalgic encephalomyelitis."
The first epidemic of "atypical polio" was reported in Los Angeles in 1934 and there was another epidemic of CFS called "abortive poliomyelitis" in Switzerland in 1939.
We now know that chronic fatigue syndrome isn't a new disease, but simply an "aborted form" of the more serious paralytic polio.
Dr. Richard Bruno, New Jersey Medical School, Department of Physical Medicine, pointed out, in the New York Academy report, that of more than a dozen outbreaks of CFS before the introduction of the Salk vaccine, nine occurred during or immediately after polio outbreaks and several of the victims of CFS had been taking care of polio patients.
Dr. Elizabeth Dowsett, a microbiologist from Britain ... states unequivocally what you don't hear in this country: True CFS (as differentiated from other fatigue states) "strikes one clinically as being polio-like and it has often been diagnosed as 'nonparalytic polio.' "
how can CFS be a neurotic problem, as the psychiatrists and many real doctors have labelled it, when it can be demonstrated that there are changes in the brain?
* * *
And therein lies the rub.
The doctors who are old enough to have seen polio first-hand have mostly retired.  We now have generations of doctors who've never seen a polio patient, and whose only knowledge of polio is that "it's eradicated".  But is it?  Maybe they need to talk to their doctor-grandfathers about what polio looks like, so they can recognize the similarities with CFS. 
Dr. Dowsett has observed "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 specialised experience about poliomyelitis and associated infections seem to have vanished mysteriously!" 
CDC can remove all reference to ME from their website, but they can't eradicate it from the memory of the doctors who trained in the 40s/50s/60s/70s before the name CFS was coined in 1988.  They can try to whitewash it as "inability to deal with stress", but there's enough medical evidence to prove that it's neurological, not neurotic.
We now have technology that wasn't available in the polio era, or even in the 1980s when the first CFS epidemics struck.  That technology can prove that patients have brain lesions (similar to MS), viral damage, biochemical abnormalities, etc.  There should be no excuse for continuing to insinuate that CFS patients are merely lazy and crazy.
Of course, acknowledging the symptoms of Myalgic Encephalomyelitis look a lot like the symptoms of Poliomyelitis would start a public hysteria that this was supposed to have been eradicated 50 years ago.  But sometimes hard truths must be faced.  There are 72 viruses in that family, and only 3 are covered by the vaccine, which means 69 are still out there waiting to strike.  THAT should scare everyone.