shadiahm 's List: me/cfs

• The US report found Gulf War illness "fundamentally differs" from stress-related syndromes described after other wars. It said: "Studies consistently indicate that Gulf War illness is not the result of combat or other stressors, and that Gulf War veterans have lower rates of post-traumatic stress disorder than veterans of other wars."

• the immune changes that we see in Chronic Fatigue Syndrome I think are absolutely what you should see in a chronic viral state, the cells that clear viruses that are latent- that are trying to reactivate, the very cells that prevent reactivation of latent viruses are the ones that are most dysfunctional.
• So the immunologic state seems very reasonable to continue to hypothesize viruses might well be  involved in the chronicity of this illness.
• I would say when you’re looking at antiviral trials, just like in any other chronic viral state, you have to say ‘What is going to be left if you cleared the virus? Is the immune system going to be healthy enough to maintain that?’ And you might want to be considering both immunomodulator and antiviral combination trials as time passes by and hope to be able to- to drop a person back into an immune system ready to hold them, if you would, once you get viral loads back down.
• The Natural Killer Cell is a good surrogate marker for the severity of illness, the function, so is the perforin content, so is the granzyme content, it’s also important to recognize the cytotoxic T-cell is equally affected. Finally these biomarkers coming from immunology-land might be very very useful in clinical trials, we’re hoping to see both CD26 and Neuropeptide Y put in to a number of different studies we have ongoing- a lovely natural history study we call the ‘Good day, bad day’ study to see what’s fluctuating with time, and we hope to answer that question for you in some future conference.

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• It is hypothesised that too vigorous exercise triggers elastase activity and G-actin cleavage in people with ME/CFS, while symptoms and immune status remain unaffected in healthy subjects and people with ME/CFS performing a self-paced and physiologically limited bout of exercise.

• In one study, 75% of people with untreated CFS who performed a 5- to 12-minute incremental low-intensity treadmill test took longer than three days to recover (Stevens, 2004).
• The temptation to adopt a traditional training program aimed at optimization of aerobic capacity should be firmly resisted (Bailey, 2003).

• Activity and symptom diaries may be very effective during early phases of the therapy process, but become less effective or more difficult to maintain during later phases of therapy.

• Research has demonstrated that various pain-related processes in the brain and spinal cord are abnormal in fibromyalgia
• Therefore, in the future, with new insights and therapies on the horizon, we will no longer need to refer our fibromyalgia patients to the rheumatologist.

• These impairments can vary in intensity, affecting the circumscribed domains of memory, attention, information processing speed and visuospatial abilities.

• But "this is relative peanuts compared to Dr P. Trey Sunderland III, a senior psychiatric researcher at the NIH, who took $508,500 in fees from Pfizer, Inc. whilst collaborating with them and endorsing their drug [Lipitor],"
• Returning to Goozner's story, did the letter his group wrote to the NHLBI in 2004, spark public discussion about the new cholesterol guidelines? No. "We released the letter to the press, but the mainstream of the national press ignored us," Goozner recalls.
• In 2008, Goozner is happy to see the statin controversy hit Business Week's cover -- though he can't help but wonder, "Where were these guys three years ago? Now, call me a cynic, but why does my perverted mind think to itself as I watch this coverage: Yeah, now we hear, just when the world's best-selling drug [Lipitor] is about to go off patent."
• The New York Times, to its credit, was quick to respond, noting that "what the [American Heart Association] did not note in its statement ... was that the group receives nearly $2 million a year from Merck/Schering-Plough Pharmaceuticals, the joint venture that markets Vytorin.

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• This Name Change Campaign is not about picking anyone’s favorite name'; it is not about showing up Wessely and his cohorts; it is about creating the right name for the right time.

• It has been known for over a decade that frontal and temporal lobe blood flow is reduced in ME/CFS, and that exercise exacerbates this reduced blood flow for up to 72 hours. The new evidence is that elevated elastase and RNase-L levels correlate with reduced blood flow.
• Dr Jonathan Kerr from London stated that his gene expression studies are finding three main abnormalities in ME/CFS patients: these involve the immune system, mitochondrial function and G-protein signalling. There are seven genes upregulated in ME/CFS - those associated with apoptosis, pesticides, mitochdonrial function, demyelination and viral binding sites. Kerr mentioned three genes in particular: gelsolin, which is involved in apoptosis and amyloidosis; one that is upregulated by organophosphates, and a mitochondrial gene involved in the demyelination of nerves.
• Mitochondrial abnormalities in the postviral fatigue syndrome. Behan WM, More IA, Behan PO Department of Pathology, University of Glasgow, Scotland. Acta Neuropathol 1991;83(1):61-5  “We have examined the muscle biopsies of 50 patients who had postviral fatigue syndrome (PFS) for from 1 to 17 years. We found mild to severe atrophy of type II fibres in 39 biopsies, with a mild to moderate excess of lipid. On ultrastructural examination, 35 of these specimens showed branching and fusion of mitochondrial cristae. Mitochondrial degeneration was obvious in 40 of the biopsies with swelling, vacuolation, myelin figures and secondary lysosomes. These abnormalities were in obvious contrast to control biopsies, where even mild changes were rarely detected. The findings described here provide the first evidence that PFS may be due to a mitochondrial disorder precipitated by a virus infection.”
• A set of chronic fatigue syndrome (ME/CFS) patients have been shown to have reduced NK cell numbers and poor NK and T-cell functioning. These problems also could interfere with the ability of the immune system to find infected cells and kill them. Intriguingly some researchers believe that chronic immune activation due to an underlying chronic infection has caused these cells to 'burn out'.
• An antiviral enzyme in this pathway called the RNase L has been shown to be fragmented in many patients. A subset of chronic fatigue syndrome (ME/CFS) patients also display increased activity of another enzyme called protein-kinase R (PKR) that is involved in killing cells infected with pathogens.
• Anthony Komaroff (Professor of Medicine, Harvard) summarised the immune abnormalities that have been demonstrated in ME/CFS. These include activated CD8 (T cells); poorly functioning Natural Killer cells; novel findings -seen only in ME/CFS -- of abnormalities of the 2-5A pathway (RNase-L ratio); cytokine abnormalities (pro-inflammatory dysregulation); increased TGF, and 27 times more circulating immune complexes than in controls.
• "This study shows that CFS (ME) shares some similarities on SPECT imaging with AIDS Dementia Complex - acute changes in radionuclide uptake in the younger population may be caused by inflammatory processes at the cellular or micro vascular level .... the findings in CFS (ME) face are consistent with the hypothesis that CFS (ME) ... results from a viral infection of neurons, glia or vasculature .....viral infection can provoke neurological dysfunction by interfering with intra-cellular mechanisms or membrane transport systems .... or by cerebral hypoperfusion due to vasculitis".

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• • While I appreciate people with MS or cancer have objective biological evidence of physical pathology, I can't help but think they too would respond the same way PWME/CFS would on the questionnaires Jones, White and Chalders love to use.
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• He wonders is this illness really to do with interoception or altered self-perception
• Patients with chronic fatigue syndrome perceive activity as more of an effort than healthy controls and underestimate their cognitive and physical abilities, while being more aware of their internal physiological state, a phenomenon called interoception.
• Inactivity increases perception of effort with exercise, through both physiological deconditioning and the related cognitive, emotional, and sleep disturbance from being sedentary.
• • I, on the other hand, perceive activity to be less of an effort after being inactive for a significant period of time (a week or more).
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• The corollary is that this enhanced bodily awareness or interoception may itself cause sedentary behaviour. When an appropriate trigger supervenes in later life, enhanced interoception may predispose some people to chronic fatigue syndrome.

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• This article presents evidence that fibromyalgia patients have  alterations in CNS anatomy, physiology, and chemistry that  potentially contribute to the symptoms experienced by these patients.
• Neurotransmitter studies show that fibromyalgia patients have  abnormalities in dopaminergic, opioidergic, and serotoninergic  systems.
• Finally, studies of brain anatomy show structural  differences between the brains of fibromyalgia patients and healthy  individuals. The cerebral alterations offer a compelling explanation  for the multiple symptoms of fibromyalgia, including widespread pain  and affective disturbances.
• • Ugh! ME/CFS is not "stress-related" anymore than cancer is!!
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• the research team studied six CFS patients and six healthy but sedentary control subjects by putting them through an exercise test on two consecutive days. The first exercise test showed no differences between CFS patients and healthy controls. However, after the second exercise test 24 hours later, CFS patients displayed significantly decreased oxygen consumption—both when compared to the mean, or middle, VO2 of their first test and when compared to the VO2 of the healthy controls during the second test. The authors concluded that “the fall in oxygen consumption among the CFS patients on the second test suggests metabolic dysfunction rather than sedentary lifestyle as the cause of diminished exercise capacity in CFS.”
• They also suggest that decreased oxygen consumption on day 2 is a distinctive feature of CFS since cardiopulmonary exercise test-retest protocols in other conditions, such as pulmonary hypertension, cystic fibrosis and obstructive pulmonary disease, do not show a similar VO2 decrease.
• Used alone, a single exercise test may not return compelling evidence for a CFS disability claim. However, a second test conducted 24 hours after the first exercise challenge likely would provide the objective documentation of postexertional malaise. According to the authors, the initial data from this study suggests that “the test-retest format offers a superior basis to establish disability consistent with SSA policy and other relevant case law.”

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• After moderate exercise, from which a normal person would recover with nothing more than a good night's rest, an ME patient will require at least 2 to 3 days while after more strenuous exercise the period can be prolonged to 2 or 3 weeks or more. Moreover, if during this recovery phase, there is a further expenditure of energy the effect is cumulative and this is responsible for the unrelieved sense of exhaustion and depression which characterises the chronic case."

• Using functional magnetic resonance imaging (fMRI), investigators at Northwestern University, in Chicago, Illinois, found individuals with chronic back pain (CBP) had alterations in the functional connectivity of their cortical regions — areas of the brain that are unrelated to pain — compared with healthy controls.
• However, the study found that compared with healthy controls, the regions of the DMN in chronic pain patients never "quiet down."
• "Our paper shows pain not only hurts patients, but the unrelenting perception of pain also harms the brain. Using technology such as fMRI, we can objectively quantify this effect," said Dr. Chialvo.
• Furthermore, the study suggests that, over time, chronic pain may lead to permanent reorganization of the brain. "We observed that the effect on the cortical regions was greater among individuals who had had chronic pain for a longer period of time."

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• We believe that the parts of the brain   that control the perception of fatigue and pain get damaged during the acute   infection phase of glandular fever. If you're still sick several weeks after   infection, it seems that the symptoms aren't being driven by the activity of   the virus in body, it's happening in the brain.
• Several studies have suggested that immune activation may be occurring in   the brains of CFS patients.

• They conjectured that increased free radical production due to immune   activation in ME/CFS damages the ion channels on the membranes of the   cells
• What kinds of activities were these ‘supergenes’ involved in? Many of the   same activities highlighted in the last study; the immune response,   apoptosis (cell suicide), ion channel functioning and metal ion binding,   cellular signaling and aberrant neuronal activity.
• They found that not only were ME/CFS patients more likely to have an unusual   form of this gene but that the more unusual their gene was the sicker they   were.
• They   found that increased rates of the two polymorphisms in ME/CFS suggests they   have a tendency to produce more of the pro-inflammatory cytokine called   tumor necrosis factor than normal.
• A recent study suggested that not only   do ME/CFS patients produce more TNF than normal but they may over-react to   it when they do produce it.
• Dr. Natelson found that the rates of blood flows in the left and right   cerebral arteries s were about 25-30% lower in ME/CFS patients than those of   the controls (!)
• This suggests that as the mental fatigue in ME/CFS gets worse and worse more   parts of the brain become, so to speak, ‘uncoupled’ from each other.

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• Unfortunately, the message of the Spark Awareness Campaign is to, “Get   diagnosed, get treated,” and ends there! The false assumption made in that  

  "Yes, both NIH and the CDC were paying more attention to CFS, but is that amount of attention sufficient for the magnitude of the problem? Is that amount of attention sufficient to find the cause of CFS, or find a treatment? Obviously not!"

  campaign is that there are healthcare providers capable of diagnosing CFS   and capable of treating it.