Understanding Long-Term Outcomes of Chronic Fatigue Syndrome

[user9876]

If you are dead you will no longer be classified as having CFS.

You mean that death cann't be cured with a dose of CBT and GET to convince you to think you are alive!

 

[Dolphin]

There is also this same issue for some people when they get the illness. I didnt have PEM with exercise at the start of this illness... PEM was only noticable after almost a year. I had all the viral symptoms but no exercised induced PEM.

thou obviously some are missing being diagnosed due to not meeting criteria..even so i personally want quite strict criteria for ME. It is only then that biomarkers are more likely to be found..so everyone with this illness can then be picked up. Till then, there are going to be people not getting a right diagnoses.

(doctors blamed viruses for my first year of what I know now was ME). Like yourself, the episodes got more and more common and longer and longer.. till I was permanently sick and bedridden ..

Due to my ME history..i call myself a sudden gradual onset as when a bout hit me..it was badly (sending me to bed) and suddenly but things didnt became consistant till over time. I dont know if I had a reactivating virus in which ended up triggering ME.. or if those viral symptoms were on and off ME.

As I mentioned before on the odd other thread, one way around this is to have graduations:



From

The Development of a Revised Canadian Myalgic Encephalomyelitis

Chronic Fatigue Syndrome Case Definition

1Leonard A. Jason, 1Meredyth Evans, 1Nicole Porter, 1Molly Brown,

1Abigail Brown, 1Jessica Hunnell, 1Valerie Anderson, 1Athena Lerch,

2Kenny De Meirleir and 3Fred Friedberg

American Journal of Biochemistry and Biotechnology 6 (2): 120-135, 2010

Meeting research versus clinical criteria: Table 1

provides all the symptoms as specified in the Revised

Canadian ME/CFS case definition. Some meet full

criteria whereas others who are very symptomatic do

not meet full criteria. We argue as we did with the

Pediatric case definition (Jason et al., 2006) that those

that meet full criteria are more homogenous and might

be best used for research purposes and we now classify

these individuals as meeting the Research ME/CFS

criteria. Still, others might have the illness but not meet

one of the required criteria. We classified such

individual as meeting Clinical ME/CFS criteria. These

individuals needed to have six or more months of

fatigue and needed to report symptoms in five out of the

six ME/CFS symptom categories (one of which has to

be post exertional malaise, as it is critical to this case

definition). In addition, for autonomic, neuroendocrine

and immune manifestations, adults must have at least

one symptom in any of these three categories, as

opposed to one symptom from two of the three

categories. We also have a category called Atypical

ME/CFS, which is defined as six or more months of

fatigue, but having two to four ME/CFS symptoms.

There is also a category called ME/CFS-Like, which

involves exhibiting all criteria categories but for a

duration of fewer than 6 months. Further, a person

could be classified as having ME/CFS in remission if

the person had previously been diagnosed with CFS by

a physician but was not currently meeting the Research

ME/CFS Criteria, Clinical ME/CFS criteria, or Atypical

ME/CFS criteria and must have 0 or 1 classic ME/CFS

symptoms.

 

[Dolphin]

Something just reminded me that Maureen Hanson got a NIH grant to study these patients. The main focus was MLVs. However, she did say she would do other testing
e.g.

We will determine whether increases in inflammatory cytokines, a growth factor, and nitric oxide, or blood cell changes are correlated with the extent of reduced physical ability that can be measured during a second exercise test taken after induction of postexertional malaise.

see:
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1006E&L=CO-CURE&P=R901&I=-3

 

[Dolphin]

Somebody drew my attention to this study:

Wheeler E.O. (1950), Neurocirculatory Asthenia et.al. - A Twenty Year Follow-Up Study of One Hundred and Seventy-Three Patients., Journal of the American Medical Association, 25th March 1950, p.870-889 (Contributors to the study: Edwin O.Wheeler, M.D., Paul Dudley White, M.D., Eleanor W.Reed, and Mandel E.Cohen, M.D.)

(they were aware of it from this page:
http://users.chariot.net.au/~posture/Da Costa'sSyndWikiwebpagel.html#anchor1102088 )
I found the full text is available free here:
http://jama.jamanetwork.com/article.aspx?articleid=289775 (click on pdf).

 

[jimells]

My overall impression from reading this thread is that the research paper is only useful to the extent it stimulates more research funding. Am I correct in assuming that this is a dirty little secret of the research 'community', i.e., everyone knows most published research is rubbish, and the purpose is to generate more grants?

Seems to me there is something very, very wrong with this...