Scheibenbogen, WTF?

Knops (from the Scheibenbogen/Charité group) wrote an promotion – thanks Dr. Speedy for pointing us to it. However, I am underwhelmed:

1. Any explanation involving "oxidative stress" or "nitrosative stress"("oxidativer und/oder nitrosativer Stress") makes me wary. This type of explanation is fashionable here in Germany for some people, but I would not bet my life on it.

2. While they are citing these cellular "stresses" very prominently, the Knops/Scheibenbogen group did *not* themselves test anything in that area. They have no own data whatsoever for this nitro/ROS stress. They cite works of other people – people that I find dubious (to put it mildly).

3. They did not use any healthy controls!!!! They compared the results of their patients against the lab reference ranges!!! Seriously, WTF???? And of course they did not compare it with other diseases. How do these results compare to those from MS patients? Or arthritis? A small group of controls from other diseases would have been interesting. What a wasted chance.

4. Personally (mildly) interesting is the MCHC value (page 31) on the high side of the reference value that they did find (which coincides with my MCHC values that are consistent somewhere around 35.5 to 36). But this is not a result that is in anyway a slam dunk for "us".

5. The values that they report are difficult to reconstruct. They should have used plots comparing results for CFS patients with results from healthy controls. By how much are the MCHC values increased in CFS patients? I don't know, as they don't report it. I would not have accepted a study that makes such important things not clear (but then again nobody cares about what I have to say).

6. The immunology results (CD8, IL2, CD57-/CD8-, CD4, IL5) seem interesting. Whether these results can be reproduced in another group of CFS patients, nobody knows.

7. The same goes for the IG subgroup deficits.

8. The correllation between MCHC and the CD*/IL* results seems *very* interesting. But then again, how does this look for healthy controls? Or other diseases?

Furthermore, I would have added "healthy sedentary controls" (if there is actually such a thing – if someone is sedentary, that person is not healthy IMHO) .

ME/CFS and Peripheral Pulse as a diagnostic tool

"Our research study explored how we might use the properties of the peripheral pulse as a diagnostic tool for CFS," said Julia Newton, an honorary consultant physician at the Newcastle upon Tyne Hospitals NHS Foundation Trust and within Newcastle University's Institute for Ageing and Health. "Pulse wave abnormalities were observed in CFS and represent a potential objective measure to help differentiate between CFS patients and healthy controls."
…

"The normal homeostatic response to standing is to preserve the brain at all costs," explained Newton. "The body therefore aims to do what it can to get the blood back to the brain against gravity by increasing the heart rate and constricting the peripheral blood vessels. Our study focused on measuring and assessing pulses from multiple peripheral sites simultaneously in both CFS patients and controls in response to a posture change."
…

"With each heartbeat, the blood volume changes in the vascular bed of the tissue and the amount of light shone onto the skin by the probes varies in synchrony with this, giving a clear pulse with each heart beat," explained John Allen, a clinical scientist from the Regional Medical Physics Department of Newcastle's Freeman Hospital. "The pulse waveform has many features in terms of its size, shape and the time for it to get from the heart to the periphery as well as beat-by-beat variability. We used special computer analysis techniques to extract various pulse features and compared these to data from normal subjects to provide the diagnostic information."
…

"Further research applied to a larger number of subjects should help decide the most reliable combination of pulse features to measure so that the technique can be applied to a general population for screening of CFS with full confidence."

(via CO-CURE)

Chronic fatigue syndrome and impaired peripheral pulse characteristics on orthostasis–a new potential diagnostic biomarker

John Allen, Alan Murray, Costanzo Di Maria and Julia L Newton

Abstract

Autonomic nervous system dysfunction is frequently reported in chronic fatigue syndrome (CFS) with orthostatic intolerance, a common symptom that can be objectively assessed.

The frequent finding of autonomic dysfunction and symptoms on standing has the potential to provide a diagnostic biomarker in chronic fatigue.

In this study we explored the clinical value of non-invasive optical multi-site photoplethysmography (PPG) technology to assess cardiovascular responses to standing.

Multi-site PPG pulses were collected from tissue pads of the ears, fingers and toes of 14 patients with CFS and 14 age-matched sedentary subjects using a measurement protocol of a 10 min baseline (subject supine) followed by 3 min of tilting on a tilt table (head-up to 70°).

Percentage change in pulse timing (pulse transit time, PTTf) and pulse amplitude (AMP) at each site were calculated using beat-to-beat pulse wave analysis.

A significant reduction in the overall pulse timing response to controlled standing was found for the CFS group (using summed absolute percentage change in PTTf for ear, finger and toe sites, median change of 26% for CFS and 37% for control with p = 0.002).

There were no significant differences between subject groups for the AMP measure at any site.

Changes in AMP with tilt were, however, weakly significantly and negatively correlated with fatigue severity (p < 0.05).

Receiver operating characteristic (ROC) analysis of timing measures produced an area under the curve of 0.81.

Experimental linear discriminant classification analysis comparing both timing and amplitude measures produced an overall diagnostic accuracy of 82%.

Pulse wave abnormalities have been observed in CFS and represent a potential objective measure to help differentiate between CFS patients and healthy controls.

14 patients and 14 controls? Could be a bit more. But they choose sedentary controls, which is good.

PDF available here.

Can your Facebook friends make a diagnosis?

Laypersons can seek help from their Facebook friends regarding medical diagnosis.
[Article in Danish]
Folkestad L, Brodersen JB, Hallas P, Brabrand M.

INTRODUCTION:
In contrast to Internet search engines, social media on the Internet such as Facebook, Twitter, etc. reach a large number of people, who are ready to help answering questions.

This type of information aggregation has been dubbed “crowdsourcing” i.e. outsourcing a task to a large group of people or community (a crowd) through an open call.

Our aim was to explore whether laypersons via Facebook friends could crowd source their way to a medical diagnosis based on a brief medical history, posted as a status update on Facebook.

MATERIAL AND METHODS:
The participants posted a brief case story on their Facebook profile and asked their “Facebook friends” to come up with possible diagnoses.

RESULTS:
The correct diagnosis was suggested in five of the six case stories, and the correct diagnosis was made after a median of ten minutes.

The quality of the responses varied from relevant differential diagnoses to very silly diagnostic suggestions.

CONCLUSION:
Based on this study, we believe that laypersons can use his or her “Facebook friends” to identify the need to see a doctor for their symptoms rather than relying on them to give them a specific diagnosis for their symptoms.

(via)

ME/CFS Differential Diagnosis Gotchas: Lyme

I was dx'd with ME/CFS for 17 years before finding out I had Lyme, Bartonella and Babesia last November. Since being on treatment for the last 7 months, my life is returning. I am getting my life back after 17 years. My passion now is to ask all of my ME/CFS friends to consider getting retested for Lyme Disease. Even if you had tests and they were negative (mine was three times from 1993-2004), and/or even if you cannot recall being bit by a tick, or think you cant have it because you don't live in a "Lyme" state. Lyme tick distribution in the US is growing past the old borders on the east coast. And there is evidence that Lyme can be gotten in other ways (See the page "First things first..." question #1 on the web site)

The standard (CDC's of course) test given (the ELISA test) to test for Lyme is 50-59% wrong Always. You need to get a western blot test at a reputable Lyme lab to accurately test you.

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It's critical for you to get a Western Blot Lyme Disease and it's Co-infections test. This is performed by many labs, but some of the labs have different standards of interpreting the tests. In order to get the most accurate results, there are reputable Lyme labs you should consider getting tested from. IGeneX, Fry labs and a few more are listed on this blogs Good Lyme Lab Page:

Good Lyme Labs