• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Nov. 2011 CFSAC Videos Posted

Nielk

Senior Member
Messages
6,970
No Poster Girl
If you'd like to do the world of ME/CFS patients a favor, when you go to bed tonight, click on all the video links on this linked page and just leave them running during the night. The reason I ask this is that the Chronic Fatigue Syndrome Advisory Committee has been bumped down from live video coverage to only live audio coverage, and video posted only after the fact. So the more views these videos get, the more likely it is we patients will get our live video coverage back. Thanks for your help.



Chronic Fatigue Syndrome Advisory Committee (CFSAC) Fall 2011 Meeting | HHS.gov

http://www.hhs.gov/advcomcfs/meetings/presentations/11082011.html

I think that this is a great idea. If you don't have the time or energy (or the will) to watch it all, at least by having them run, it will show them that these have been viewed by many and is an important issue for us to have it available streaming live for the next time the meeting comes up.
 

rlc

Senior Member
Messages
822
Hi Justin re I dont believe Unger for a minute if she is still doing three Reeves studies right now. actions speak louder than words. she is a criminal, less so than reeves, but still a criminal and needs to go now.

Personally I find the brown nosing of Unger the CDC and CFSAC more than a little offensive, and am very disappointed to see this approach taken by people who claim to represent the patient community. All you need to do is compare the continual waste of time studies that the CDC are still doing, with the work that is being done by the non government funded Chronic Fatigue Initiative, and it is blatantly obvious that the CDC under Unger is taking the piss, the CDC could have recruited the likes of Lipkin etc, but no, they just keep wasting everyones time. Just because the CDC under Unger isnt being as blatantly offensive as they were in the past, doesnt mean theyre taking this seriously.

The thought of the CDC writing a fourth shit definition for CFS, far from fills me with hope!!!!!

I have noticed Ungers comments about not knowing if CFS and ME are the same thing or not, is this women for real, its on their own website that there different diseases!!!

Regarding changes to the CDC website, I would like to see the garbage in this section http://www.cdc.gov/cfs/general/diagnosis/testing.html which explains the pathetic amount of testing that they recommend before someone gets diagnosed with CFS, greatly revised and for it to include the recommendations in this article that explains how bad the CDC guide lines are, which would save hundreds of thousands of people from pointless suffering. http://www.bmj.com/content/334/7605/1221?tab=responses

The myth of Chronic Fatgue Syndrome Shirwan A. Mirza, MD, FACP, FACE

It pains me to see the concept of Chronic Fatigue Syndrome (CFS)
promoted by individuals and organizations alike, including a prestigious
US Government Agency such as CDC (Center for Disease Control).
I do not recall using CFS as a diagnosis. The reason is simple, I go
beyond the CDC criteria in investigating chronic fatigue.

In their 10-minute consultation "Tiredness", Drs Moncrieff and Fletcher
jump to a speedy conclusion that the patient under discussion has
depression. That is exactly what patients dislike about our diagnostic
acumen, attributing major symptoms in their life to mental diseases
without first exhausting all the underlying physical ailments.

I have yet to see a diagnostic criteria list for fatigue that is
complete. This unfortunately includes the diagnostic criteria for Chronic
Fatigue Syndrome issued by CDC.

No wonder we keep citing CFS as a cause for fatigue when we ourselves fail
to pinpoint the diagnosis.

In my endocrine practice after ruling out the obvious causes of fatigue
(mentioned in this 10-minute consultation, I will also add adrenal
insufficiency which is an autoimmune disease not mentioned by name in the
mini consultation), I will do the following tests and I almost always find
the cause for fatigue:

1. True biological reference range of TSH should be 0.3-2.5.
If TSH is > 2.5, especially when Thyroid Peroxidase titer is > 10,
the patient might have evolving hypothyroidism. If you go by your
laboratory's reference range of 0.5-5, of course you will miss the boat,
and resort to the waste basket diagnosis of CFS.

2. Check glucose tolerance test on people who are obese, have family
history of diabetes, and have nocturia, or polyuria. The fasting plasma
glucose should be <100 mg/dl (5.5 mmol/l).Postprandial plasma glucose
should be <140 mg/dl (7.7 mmol/l)at 30-minute, 60-minute, 90-minute,
and 120-minute.
If you do not use these diagnostic thresholds, you will miss the diagnosis
of diabetes, or impaired fasting glucose, or impaired glucose tolerance.
The latter 2 are also called pre-diabetes. Pre-diabetes and diabetes both
can cause severe fatigue if remained undiagnosed. The mechanism is through
loss of glucose (body's fuel) in the urine (Glycosuria>

Check vitamin B12 level. The cutoff reference range is >300 pg/mL
(>221 pmol/L), or even higher. Most laboratories in the US have the
reference range at 160 or 180, erroneously low. If in doubt, check
homocysteine level, the reference range of homocysteine should be between
5 and 15 mol/L (some authorities use 10 as cutoff).
If you rely on outdated reference range, you miss the boat and fall in the
trap of CFS.

3. In the Northern regions of the United States and Europe, vitamin D
deficiency is rampant. In some cities in the United States 70% of the
population in the winter might have vitamin D deficiency (such as Boston).
Vitamin D deficiency is responsible for calcium and phosphorus absorption
(among other host of other functions).
Lack of phosphorus means lack of ATP in the body, which means that you
feel tired.

I have helped thousands of victims of this type of chronic fatigue through
vigorous vitamin D supplementation. Not to mention that vitamin D
deficiency causes also severe myalgia and bone pains (osteomalacia), often
missed since vitamin D deficiency is not on the list of differential
diagnosis of fatigue, including (tragically) the CDC list. Failure to
recognize vitamin D deficiency leads you to misdiagnosing patients as CFS
and/ or fibromyalgia. Nearly 70% of patients with fibromyalgia have
vitamin D deficiency, i.e. misdiagnosed.
The true reference range of 25 hydroxy vitamin D is 32-100 ng/ml.

4. Sleep deprivation is a very common cause of fatigue. This was
mentioned in the 10-minute consult.

5. Celiac disease is relatively common (~1% of Caucasians have it,
most of them undiagnosed). If you don't think of Celiac, you will be an easy
victim in the trap of CFS.
Celiac can cause pan-malabsorption of iron, vitamin D, B12 (mentioned
above) in addition to other nutrients and minerals.

6. If iron saturation is high, perform genetic testing for
hemochromatosis. This is another relatively common genetic disease in the
Caucasians.

Any list that does not address the above diagnoses (with the
reference ranges that I mentioned), would lead to missing the root causes
of fatigue. CFS is not a diagnosis; it is merely re-labeling fatigue with
a fancier name.

It is the time that CDC revisited the criteria of CFS, and included the
causes I cited above.

I can say with confidence, backed up with data of hundreds, or even
thousands of patients with fatigue who I have helped over years, that
patients with chronic fatigue syndrome are patients who have not been
adequately worked up in accordance with the criteria mentioned above.
It is for this reason that CFS is not in my medical vocabulary.

Competing interests:

None declared