Discussion of full IOM report

[Simon]

It's a bit daunting at 300 pages, but they are small pages and it's remarkably readable.

Dowload here (free registration required, or read online without registration)

From what I've read so far, it's a cracker - congratulations to the IOM team for such thorough work. I'm sure this report will be much-quoted.

Here's a starter from me:

Review of the Evidence on Major ME/CFS symptoms (p71-)

LIMITATIONS OF THE RESEARCH BASE

- Unrepresentative samples: mostly well-educated white middle-aged women from tertiary clinics (tho middle-aged women might be representative according a recent large Norwegian study)

- criteria problems - mostly Fukuda as most research uses this

A major limitation of the Fukuda and other ME/CFS case definitions is
their polythetic diagnostic criteria ["pick 4 symptoms, any 4 of 8 will do"]. Thus two patients could have very little symptom overlap yet both be diagnosed with ME/CFS

...This problem is inherent in the study of any illness with polythetic diagnostic criteria

Internal validy

In many cases, studies lacked properly matched controls to account forconfounders. ... Because almost all controls were healthy and most were physically active, the findings fromthose studies do not shed light on which symptoms and signs distinguish ME/CFS from other disorders with some overlapping symptoms.

...
There also were few studies of the early stages of the
illness. This is understandable given that the diagnosis can be made only
after 6 months of symptoms (see Chapter 3 and below), but nevertheless is
a barrier to understanding the natural history of the illness.

-
Reliability

A lack of replication and validation in many studies limits the ability to
assess the study findings critically.

Much more to come in due course.

 

[Simon]

love this bit too, on how fatigue in ME/CFS/SEID isn't just generic fatigue and is much worse than in other fatiguing illnesses

FATIGUE AND ITS IMPACT ON FUNCTION

The dictionary definition of fatigue as a noun is “weariness from
bodily or mental exertion.” Fatigue is not typically considered a disease
but is commonly used in medicine to represent a broad spectrum of tiredness,
from the physical, cognitive, or emotional feeling at the end of a long
day to the emotional or physical toll of acute, chronic, or terminal illness
(Gambert, 2005).

Fatigue is one of the most common and nonspecific presenting complaints
in primary care. Unfortunately, the word “fatigue” does not convey
information about the cause, severity, or chronicity of fatigue or its impact
on functionality.

The Gambert reference is great, distinguishing between physiologic normal fatigue in healthy people, and organic fatigue assoicated with a medical problem

Physiologic Fatigue: This form of fatigue may develop in any healthy individual under certain circumstances, such as during times of stress, change in diet, insufficient rest or inadequate sleep, or overactivity. The older person may commonly have this form of fatigue, and a thorough history can help identify issues that may help alleviate the precipitating problem so that it can be remedied.

Organic Fatigue: This form of fatigue is associated with some medical problem and is a common type in the older person. Problems such as anemia, chronic renal or liver disease, chronic obstructive pulmonary disease, congestive heart failure, infections, and a variety of endocrine/metabolic abnormalities are the most common organic causes. Work-up and treatment is based on the underlying abnormality that is found.

Back to the report:

Regardless of what criteria are used, however, ME/CFS patients often have a level of fatigue that is
more profound, more devastating, and longer lasting than that observed in patients with other fatiguing disorders

Thank you...

Impact of Fatigue on Function

Looking just at the SF36 "vitality measure", Table 4-1 demonstrates the profoundly low scores for ME/CFS compared with the other conditions
[data: Healthy score 60-70, other fatiguing conditions typically 40-50, mecfs 15-25]

Summary

Fatigue, chronic fatigue, and particularly the impact of fatigue on function should be assessed in making a diagnosis of ME/CFS. ...

However, ME/CFS should not be considered merely a point on the fatigue spectrum or as being simply about fatigue. Experienced clinicians and researchers, as well as patients and their supporters, have emphasized for years that this complex illness presentation entails much more than the chronic presence of fatigue. Other factors, such as orthostatic intolerance, widespread pain, unrefreshing sleep, cognitive dysfunction, and immune dysregulation, along with secondary anxiety and depression, contribute to the burden imposed by fatigue in this illness.

The challenge in understanding this acquired chronic debility, unfortunately named “chronic fatigue syndrome” for more than two decades, will be to unravel those complexities.

This, of course, is different from the view of some doctors, highlilghted in this thread (comments from docs on IOM report)

wow, that's only 7 pages worth so far, I'm hoping the rest will be a good deal less quotable

 

[MikeJackmin]

I think we got really lucky here. This could so easily have been so much worse.

 

[Bob]

I posted this elsewhere, but I think it's worth posting here as well...

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.

 

[Simon]

I posted this elsewhere, but I think it's worth posting here as well...

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

Thanks, Bob, you're ahead of me. I'm delighted they recognise implicitly that many patients pace with the main aim of reducing frequency and severity of symptoms, esp PEM, so questions need to probe this to get true picture

Elsewhere I posted this from the brief report

Here's some stuff I really like about the definition, and the guidance on diagnosis:

Questions for Eliciting Medical History/PEM
How long does it take to recover from physical or mental effort?
•If you go beyond your limits, what are the later consequences?
•What types of activities do you avoid because of what will happen if you do them?

 

[MeSci]

I just tried to read the report online but the writing was too small and fuzzy.

Are there qualifications for the key symptom of unrefreshing sleep? Some of us have found solutions to this, and now sleep quite well, but we still have ME/SEID. I also believe that I read here that some people don't have that symptom. Does that definitely mean they don't have ME? (It's still ME in the UK, so I don't want to switch yet!)

It seems to be quite common to start with hypersomnia and later switch to insomnia/hyposomnia. Is there any reference to that?

 

[SOC]

I just tried to read the report online but the writing was too small and fuzzy.

Are there qualifications for the key symptom of unrefreshing sleep? Some of us have found solutions to this, and now sleep quite well, but we still have ME/SEID. I also believe that I read here that some people don't have that symptom. Does that definitely mean they don't have ME? (It's still ME in the UK, so I don't want to switch yet!)

It seems to be quite common to start with hypersomnia and later switch to insomnia/hyposomnia. Is there any reference to that?

I think the emphasis here is on unrefreshing. The point is not whether we sleep well or not. The point is that sleep does not relieve the fatigue/exhaustion, as it does with healthy people. Sleep does not refresh us. Our lack of energy is much more complex than a simple need for a good night's sleep. I think that's the point they're trying to make.

 

[lansbergen]

I think the emphasis here is on unrefreshing. The point is not whether we sleep well or not. The point is that sleep does not relieve the fatigue/exhaustion, as it does with healthy people. Sleep does not refresh us. Our lack of energy is much more complex than a simple need for a good night's sleep. I think that's the point they're trying to make.

Not sleeping well does not help and one needs good sleep to heal.

Sleeping like a baby helps reduce exhaustion but that did not happen untill I had improved enough.

 

[alex3619]

I find enough rest or adequate sleep take the edge off because my instant energy recharges. The deep (aerobic) energy that lies beyond that is unaffected though.

 

[Soundthealarm21]

I posted this elsewhere, but I think it's worth posting here as well...

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

That was like reading poetry. It's definitely the case for me as I move around so little that I never let myself get into a PEM state, not anymore anyways.

 

[Esther12]

I think the emphasis here is on unrefreshing. The point is not whether we sleep well or not. The point is that sleep does not relieve the fatigue/exhaustion, as it does with healthy people. Sleep does not refresh us. Our lack of energy is much more complex than a simple need for a good night's sleep. I think that's the point they're trying to make.

Do they really need to emphasise the fact that sleep is not curative in this way? Having a nice relaxing bath can cure many people's fatigue... not with CFS though. That doesn't mean that a key part of the criteria should be 'bathing is unrefreshing'.

 

[Soundthealarm21]

Do they really need to emphasise the fact that sleep is not curative in this way? Having a nice relaxing bath can cure many people's fatigue... not with CFS though. That doesn't mean that a key part of the criteria should be 'bathing is unrefreshing'.

I think when discussing criteria for an illness it needs to be spelled out in black and white to make it as simple and easy to understand as possible. It might be a no brainer to us, but to a new sufferer or someone that thinks they have this illness (but actually don't) it would be helpful to have that clearly stated.

 

[Ecoclimber]

It's a bit daunting at 300 pages, but they are small pages and it's remarkably readable.
-
Reliability
A lack of replication and validation in many studies limits the ability to
assess the study findings critically.

So I would assume the comment above applies to the PACETrial Study as well, Right?

 

[SOC]

I think when discussing criteria for an illness it needs to be spelled out in black and white to make it as simple and easy to understand as possible. It might be a no brainer to us, but to a new sufferer or someone that thinks they have this illness (but actually don't) it would be helpful to have that clearly stated.

Exactly! Not only new sufferers or people who think they have this illness (but don't), but the PCPs for which these criteria are designed need to be told that sleep does not relieve our energy levels. To us, it's glaringly obvious. The average PCP who knows nothing about this illness needs to be told this is a critical feature of PEM because our level of unrelievable exhaustion is completely unfathomable to them.

 

[Esther12]

I think when discussing criteria for an illness it needs to be spelled out in black and white to make it as simple and easy to understand as possible. It might be a no brainer to us, but to a new sufferer or someone that thinks they have this illness (but actually don't) it would be helpful to have that clearly stated.

I do have a concern that some of the biopsychosocial lot have been emphasising sleep problems recently though. Anything that could favour their approaches is probably a bad thing imo.

 

[Bob]

Accessing the full report.

It's easy to download the full report and you don't need to register.. you can download as a guest. Click on the following links: "I don't have an account" then "download as a guest", at the bottom-right of this webpage:
https://www.nap.edu/login.php?record_id=19012&page=http://www.nap.edu/download.php?record_id=19012

Alternatively the full report has been uploaded to Phoenix Rising:
http://forums.phoenixrising.me/inde...et-whats-in-the-iom-report.35465/#post-556850

 

[Sean]

We have to accept that no matter what approach and name is used, or findings come from research, the Wessely school of psychs will always try to spin it in their favour. But that is no excuse for us not to keep moving forward.

There will be no single decisive moment when they suddenly stop having any serious influence, but that influence is diminishing bit by bit, day by day. The tide has turned against them, and all their spin and hot air and bogus hand-wringing 'concern' for our welfare can't change that.

 

[Bob]

I've only read a fraction of the full report, and I haven't read much about sleep yet, but it does distinguish between unrefreshing sleep and disturbed sleep... It says that disturbed sleep is not a factor for a diagnosis...

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.

So a good sleep pattern, and sleeping well, wouldn't exclude you from a SEID diagnosis.
(Whereas sleeping soundly 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. i.e. a good night's sleep will not cure you, or significantly improve your illness. As @SOC says above, spelling out the obvious like this might be very helpful because it will stop ignorant health professionals saying "there-there dear, you go home and get yourself a good nights sleep, and I'm sure you'll feel better." And it will help stop the misinterpretation that ME/SEID is a stress-related illness experienced by people who are over-worked etc.

The best description of my interpretation has been posted above by @SOC

I think the emphasis here is on unrefreshing. The point is not whether we sleep well or not. The point is that sleep does not relieve the fatigue/exhaustion, as it does with healthy people. Sleep does not refresh us. Our lack of energy is much more complex than a simple need for a good night's sleep. I think that's the point they're trying to make.

 

[Bob]

Thanks, Bob, you're ahead of me.

I haven't read it all.. I've been skimming it.. looking for bits that most interest me.

 

[Bob]

For folks who are interested...

A brief discussion of the definition of 'recovery' is on page 263, mainly focusing on the paper by Adamowicz et al. 2014. It makes it clear that a recovery requires a return to pre-morbid levels of health, and that some of the literature conflates improvement with recovery. (I think we can guess what research they're referring to! Hint = PACE!)

And a brief discussion re CBT/GET is on pages 264-265. It says that CBT & GET do not improve employment outcomes.

Perhaps more significantly, and of more interest to many, the report includes a large section discussing research in relation to PEM in which it e.g. cites the Lights' work, and it discusses CPET tests including explaining the importance of a two-day CPET test (rather than a one-day test) to demonstrate a post exertion reaction! (It seems that they've taken notice of our submissions.)

And it includes a large section discussing immune dysfunction (e.g. it discusses NK cell dysfunction).

Sorry - I didn't make a note of all the page numbers - I'll try and find some quotes later when I'm on my PC.