ME/CFS Buzz (April 4th, 2012) CFS Patients Pass the Effort Test, West Nile Virus, Cancer …

Posted by Cort Johnson


Yes! They are Really Trying……CFS Patients Fail Cognitive Test and Pass the Effort Test…

J Clin Exp Neuropsychol. 2012 Mar 23. [Epub ahead of print] Test effort in persons with Chronic Fatigue Syndrome when assessed using the Validity Indicator Profile.Cockshell SJMathias JL.

Everything, apparently, has to be nailed down in science. At the Ottawa IACFS/ME conference Pacific Fatigue Lab researchers were able to conclusively demonstrate that yes, CFS patients were exerting as much effort in the exercise studies as the healthy controls. (Ironically at a CFSAC meeting Dr. Snell remarked how much harder it was to get the healthy controls to come back for the second day of the exercise testing than the metabolically challenged and fading ME/CFS patients…Indeed, every researcher seems impressed with the courage and the willingness of ME/CFS patients to sacrifice their well-being for the cause of science….)

In this study Australian researchers found that, yes, ME/CFS patients were not muffing the cognitive tests because they weren’t giving their all – they were muffing them because they were actually more cognitively challenged. (In fact some brain research suggests that ME/CFS patients brains may, because tjey aren’t working as efficiently as before, have to work harder to accomplish the same task).

Studies like this seem like overkill at times but its good to have questions like these settled.

Whoops1Whoops…Our Mistake…..Twenty Years of Antidepressant Use Goes Down the Tubes

CNS Drugs. 2012 Apr 1;26(4):297-307. The role of antidepressants in the management of fibromyalgia syndrome: a systematic review and meta-analysis. Häuser W, Wolfe F, Tölle T, Uçeyler N, Sommer C.

Physicians and patients should be realistic about the potential benefits of antidepressants in fibromyalgia…

Few people with fibromyalgia or ME/CFS are not, at least at some point in their pass through the medical system, given a trial of anti-depressants. In fact it may that anti-depressants are the most frequently prescribed drug that a mostly befuddled medical profession provides for FM and ME/CFS patients. This large review of no less than 35 FM studies suggested that the gut-level “I don’t know what’s wrong with you so let’s try some anti-depressants’ response not only doesn’t work but is may be harmful.

The review concluded that while antidepressants do work in a small number of patients, the remarkable (yes, they used the word ‘remarkable’) dropout rate in antidepressant studies due to adverse effects or no symptom relief, suggested that on the whole these drugs were doing more harm than good.

What a Virus Can Do

Front Neurol. 2012;3:37. Epub 2012 Mar 21. Neuromuscular Manifestations of West Nile Virus infection. Leis AA, Stokic DS.

This review paper focuses on West Nile Virus (WNV) not CFS but it may be instructive because a) WNV attacks an area of the brain that could be involved in ME/CFS and (b) some  but not all of the symptoms are eerily similar. 

WNV is a encephalitic form of virus that doesn’t cause problems for 90% of the people it infects. About 9% get a fever and in the unlucky 1% can get into real trouble. 

If this virus gets beyond your defenses, besides the brainstem it can attack the heart, the peripheral nerves and the motor axons and the spinal sympathetic neurons and ganglia. In severe cases it can cause paralysis and even death.  It’s the infection of the sympathetic neurons and ganglia, where it gets really interesting for ME/CFS as that infection causes ‘autonomic instability’. (Check out Pocinki’s article on Research1st for an evocative snapshot of the ‘autonomic instability’ found in CFS.)

Interestingly, ‘many’ patients plagued by ‘subjective, generalized weakness and disabling fatigue’; ie a CFS-like condition that can last for a long time. (A study at the Ottawa Conference found many survivors of another emerging virus – the Avian (Bird) flu virus – came down with a CFS-like condition.)  Researchers are unsure if the virus is still present or if it does its damage early and then disappears.

Reports suggest that a WNV infection may also place one at risk of getting an autoimmune disorder. It’s not clear if a subset of people with ME/CFS have an undiagnosed auto-immune disorder but some physicians, including Dr, Peterson, have suggested that autoimmune disorders (thryoiditis, Sjogren’s Syndrome) may start showing up in longer-term patients.

Commonalities – Mysterious fatigue and weakness, difficulty finding the virus in longer duration patients, autonomic nervous system instability, involvement of the brainstem, a possible long-term risk of getting an autoimmune disorder – all have been at least mentioned some time or the other in ME/CFS. Does an infection targeting either the lower brain or peripheral nerves cause ME/CFS? Nobody knows at this point but this article suggests it could cause CFS symptoms.

Pathogen Answers Coming – With at least three large pathogen studies underway it’s hard to imagine that the pathogen question doesn’t get largely resolved this year…The CFI Hornig/Lipkin study looking at the blood, tears, saliva and feces in some 200 patients is the most comprehensive, but the CFIDS Association and CDC studies at Blood Safety Research Institute will be looking at pathogens from a novel viewpoint and the WPI, under the direction of Vince Lombardi, is hard at work at its own pathogen study using the latest technology.

CFS Research Finally Informing Cancer Fatigue Research? Theory Paper Suggests Cancer Researchers Looking at ME/CFS For Answers

Clin J Oncol Nurs. 2012 Apr 1;16(2):E56-68. Fatigue and disrupted sleep-wake patterns in patients with cancer: a shared mechanism. Wu HS, Davis JENatavio T.

Therefore, in the absence of knowledge about cancer-related-fatigue (CRF)mechanisms, emerging biologic models from chronic fatigue syndrome may assist in understanding the cause of CRF

A strange pattern of fatigue and concentration problems (‘chemofog’) in post-cancer patients is attracting more and more research. In fact the number of clinical trials focused on improving fatigue in post-cancer patients dwarfs those found in CFS but as yet there’s been little cross-fertilization between the two groups.

Now these authors suggest that researchers should start looking to CFS to help explain the fatigue, sleep and cognition problems in post-cancer patients.

They believe that abnormalities in circadian (24 hour) HPA axis activity could be throwing sleep patterns off. It’s hard to imagine that the HPA axis is the answer to the fatigue in ME/CFS or cancer but its also hard to imagine that it doesn’t at least play a part. Its pretty clear, for instance, that circadian rhythms of cortisol production in ME/CFS are off with lower than normal levels produced in the morning relative to afternoon/night-time.  Those low levels could perhaps help explain feelings of increased fatigue in the morning relative to the afternoon.

The HPA axis may not be the cat’s meow in ME/CFS but this paper does suggest that outside researchers are finally looking ME/CFS’s way.

Lifestyle SmallestCan Meditation Make People Smarter? (Can it help make people with CFS smarter?)

These findings suggest the insula to be a key structure involved in aspects of meditation

A recent study suggests that a consistent course of meditation in healthy people effects an area of the brain called the insula/ (Some studies suggest this area is functioning abnormally in ME/CFS). The study found the long term meditators had increased folding (gyrification) in the insula relative to non-meditators. Researchers believe that increased folding results in quicker information processing (something people with ME/CFS would love to have :)) and may render meditators less susceptible to stress related disorders such as heart and digestion problems.

The fact that the degree of folding was dependent upon the duration meditation suggests the meditation slowly changes the structure of the brain. One caveat was that the study involved long-term meditators; it’s not known how long it takes for meditation to have an significant effect. Still with the insula controlling both the autonomic nervous system and ‘cognitive integration’ the potential impact on CFS is intriguing. Dr. Fredberg has found that meditation exercise are quite helpful in a subset of ME/CFS patients.

“The insula has been suggested to function as a hub for autonomic, affective and cognitive integration,” said Luders. “Meditators are known to be masters in introspection and awareness as well as emotional control and self-regulation, so the findings make sense that the longer someone has meditated, the higher the degree of folding in the insula.”

Earlier studies have found that meditation results in reduced pain sensitivity and that long term meditator have stronger connections between brain regions.

Behavioral Modification Alters Brain Activity Helps FM Patients Reduce Pain levels 

Exp Brain Res. 2012 Mar 17 Treatment-related changes in brain activation in patients with fibromyalgia syndrome.Diers MYilmaz PRance MThieme KGracely RHRolko CSchley MTKiessling UWang HFlor H.
Insula CFS1Speaking of the insula. This small German study (10 patients) found that not only did ‘behavioral extinction training’ both significantly reduce the impact of pain and pain sensitivity but it also altered which part of the insula was activated. Specifically it suggested that activation of the front part of the insula was associated with more pain while activation of the back part of the insula was associated with less. Not everyone in the trial responded and the authors suggested that a close look could pick out who responded and why…




CFSResearcherUS ME/CFS Disability Survey Seeks Answers 

Social Security Disability is a critical lifeline for many with CFS but information on success rates and what actually works is sketchy.  Phoenix Rising and Speak Up About ME have launched an extensive survey to help determine who gets disability and who doesn’t and why.  Check out the survey here. 

US FM Survey Shatters Misconceptions

An American Chronic Pain Association survey blew holes in a few misconceptions about FM…..Instead of running to the doctor at the first hint of illness people with FM actually usually take their good time before they make it to a doctors office. The survey found that 75% of patients took over 3 years to see a doctor and 1/3rd waiting until the pain drove them to do so.

  • Sex and Money Both Take Hits– Almost 2/3rds of survey participants reported declines in intimacy after FM with more men having problems with physical intimacy than women. With over half reporting declines in incomes FM struck hard at the pocketbook as well.
  • People with FM Understate Public Support- while most people with FM felt isolated and looked down upon the poll suggested the opposite was true and that many healthy people feel FM patients are courageous in the face of their disorder.

Blood Flow Surgery Suggests Blood Vessels May Play Role in Disabling, Neurologic Disorder (err…. Multiple Sclerosis)

In a finding that may, who knows?, one day impact ME/CFS sufferers, researchers at a scientific conference reported that angioplasty surgery to open veins in the neck and chest resulted in significant improvements in both physical and mental health (well-being, physical abilities, energy, sexual function, pain, etc.) in MS patients. With low blood volume appearing to be ubiquitous in ME/CFS and blood vessels an active area of study, it could turn out that CFS patients have more in common with MS patients than high levels of fatigue. Several CFS studies are evaluating the effects of drugs that may be able to increase blood flows.

Silent No More….Swedish Researchers Demand More Funding for ME/CFS

We have a large number of seriously ill people who are denied care by the county. The acute care shortages must now be addressed, 

In a hard-hitting editorial Swedish researchers descried the lack of treatment opportunities for ME/CFS patients in Sweden. Stating that in most parts of the country ME/CFS patients have no options for treatment, three researchers called for ME/CFS centers in all parts of the country and mobile teams to meet the needs of the most afflicted. Noting that plenty of researchers would love to study the illness if funding was available they also called for specific research funds to be allocated to study CFS.  
They’re asking for alot but Sweden’s smaller neighbor, Norway, in just a few years made a dramatic change in how it views ME/CFS. Check out a Google Translation of the article.

EscapeRecovered Aussie ME/CFS Patients Walks About For ME/CFS

Rachel Klyve was just a normal high school kid when she came down with a case of glandular fever (infectious mononucleosis) and never recovered. It got quite bad for Rachel (strong light and noise sensitivities, unrelenting dizziness and vertigo) but time, a very (very) strict diet and treating gut issues eventually allowed her to make a full recovery. She’s on Day 26 of her Walkabout to raise money for ME/CFS….Check out her story and her blog with pictures of beautiful Australia here –

CFIDS Association Webinar on Cognition on April 11th

From the CAA Announcement. “Impaired cognition in CFS is one of the most disabling and frustrating symptoms patients experience. Deficits in short-term memory, information processing and processing speed have been documented by several groups. How closely does the medical literature reflect patients’ experiences and how can cognitive testing help support self-reported measures? Dr. Gudrun Lange, professor of radiology at the New Jersey Medical School, joins Dr. Suzanne Vernon, scientific director of the CFIDS Association of America, to explore these topics. Dr. Lange is also on staff at the VA Medical Center in New Jersey.”


In some ways, there seems to be very little I can do to help myself or the other sufferers. But what I can do is create art. It is a small thing, and it may sound impossibly lacking in usefulness, but I have found that it is the greatest weapon I possess

‘Enchanted Sleep’ – Check out a haunting art photo exhibit by Sandra Allegra that illuminates the ‘netherworld’ of CFS.

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