Release of the IOM report - live webcast-2/10/2015

[Bob]

The full document distinguishes unrefreshing sleep from disturbed sleep. They are not the same.

Sleeping like a baby wouldn't exclude you from a SEID diagnosis. (But I've just discovered that sleeping like a baby would exclude you from a CCC diagnosis.) Unrefreshing sleep means that you have limited energy when you go to sleep and limited energy when you wake up.

Standard sleep studies are not substantially abnormal in people with
ME/CFS. Several studies have found differences in sleep architecture in
subsets of people with ME/CFS and in people with ME/CFS compared with
healthy controls (Whelton et al., 1992), yet the current evidence base is not
strong enough to identify ME/CFS-specific sleep pathology. It is clear, however,
that people with ME/CFS universally report experiencing unrefreshing
sleep, and further research will be important to determine whether there is
a specific sleep abnormality common to ME/CFS patients or a heterogeneity
of abnormalities that may define subsets of ME/CFS patients.

 

[Bob]

Page 86 of full report, acknowledges that PEM may be a hidden feature of the illness in patients who manage their activity levels.

PEM is worsening of a patient’s symptoms and function after exposure
to physical or cognitive stressors that were normally tolerated before disease
onset. Subjective reports of PEM and prolonged recovery are supported by
objective evidence, including failure to normally reproduce exercise test results
(2-day CPET) and impaired cognitive function. These objective indices
track strongly with the presence, severity, and duration of PEM.
Patients’ experience of PEM varies, and some patients may have
adapted their lifestyle and activity level to avoid triggering symptoms. As a
result, health care providers should ask a range of questions (see Chapter 7,
Table 7-1) to determine whether PEM is present. Minimally, patients should
be asked to describe baseline symptoms, the effects of physical or cognitive
exertion, the time needed to recover to the pre-exertion state, and how they
have limited their activities to avoid these effects. If the patient is unable
to answer these questions clearly, health care providers may also ask the
patient to track symptoms, activities, and rest in a diary—for example, in
order to identify PEM patterns.

 

[lansbergen]

I wonder they have ever looked for upper airway obstruction from inflammation swelling Now my cranial nerves are healing I can breath better and better. I can even feel the airflow going down now.

 

[Ember]

Canadian Consensus Criteria: “There is a small number of patients who have no pain or sleep dysfunction, but no other diagnosis fits except ME/CFS. A diagnosis of ME/CFS can be entertained when this group has an infectious illness type onset.”

 

[jimells]

Well, I am glad that the new report has moved away from viewing this disease as a trash heap diagnosis of exclusion that can only be made once every other disease under the sun has been ruled out. Lots of people out there have hypothyroidism, anemia, diabetes, B12 deficiency, sleep apnea etc. yet despite adequate treatment for those fatiguing conditions they are still left with ME-related fatigue and other symptoms.

But don't those people need to be identified and treated? I do not like the idea that my documented B12 deficiency would not have been found. I'm still sick, but many neuro symptoms have improved, possibly with the help of B12.

 

[Debbie23]

The problem with GPs diagnosing us is that it will be left up to them to treat us.

Will they do the testing for virals, nk cell function, tilt table testing and others so that they can treat us with antivirals, LDN, GcMaf etc ?

The IOM report only mentions treating symptoms like sleep and pain.

I could be wrong but I got the impression from what they said at the release of the report that they will definitely be expanding on all of this in the clinical guidelines. From what I read into what they said at the release presentation, they indicated that when those were out there would be no excuse for any doctor not to diagnose ME/SEID AND treat the most basic symptoms, or at least no excuse to leave patients struggling to cope without support and assistance. Given the tone of the presentation I suspect the guidelines will state to refer on if the doctor isn't sure how to deal with things themselves. Naturally I could be wrong here as none of us have seen it yet, but it's what I took from what they were saying, and that they only didn't go into it on the day of release itself due to time constraints. Will be interesting to see if that's right.

Edited for clarity