CDC and homebound patients with CFS, said to be relevant to ME by the IOM (who redefined ME CFS = SEID).
Lets be realistic and ask ourselves, what does it mean for science (medically speaking) to be home bound CFS or SEID patient? It means little to nothing unfortunately. Sadly,
no abnormalities need be present to be classified as severe, other than be someone who lives at home, or lays in a bed with a diagnosis of CFS. Lots of mentally ill people lay in bed. They too can meet the criteria for severe CFS. We know the CDC have used people on the phone for CFS 'research'. Diagnosed 'CFS' over the phone!
''the CDC first screened 56,000 people in Wichita, Kansas for CFS via telephone''
Source:
http://phoenixrising.me/research-2/...onic-fatigue-syndrome-mecfs-i-an-introduction
Should the severe CFS be studied? Yes of course.
Yet lets make sure when someone is 'severe' we know what that means in comparison to non severe.
1st problem, no one knows. The CDC don't know either, because the CDC will have to use
'fatigue' as the basis of severe, clearly, as they blueprinted the chronic fatigue syndrome and ignored the whole plethora of organ system dysfunctions in its CFS.
Since the IOM published their fantasy about SEID replacing 'ME/CFS' after the media blitz settled down, diagnostically we see that SEID is no different to Fukuda CFS (and the same as British CFS/ME), and just adds Post Exertional Malaise (PEM) to CFS diagnostically. Unfortunately for biomedical researchers, PEM can be a form of emotional upset after undertaking an activity in people with fears of activity.This means psychologists and psychiatrists simply need to find people with this form of PEM (somatization over activity), and hey presto. SEID is not an inflammatory disorder. Knowing this, a fool can see the SEID remove inflammation as a required diagnostic signature of SEID. This was probably done by preventing the release of the Montoya paper in May 2014. Where did that 'game changer' go? The one announced in March 2014? How curious the IOM rushed their SEID to market....
What does this means for researching severe CFS patients? It means a bad deal.
Post Exertional Relapse (PER) is what the CDC and SEID refuse to categorize, but is a feature of organic
CFS and ME.
A relapse, of course, is not a malaise! A person with diabetes may relapse into a state of hyperglycemia by failing to stick to a given insulin regimine. The same happens to someone with ME with their organic disease if their disease state is worsened from activity, infection, etc.
Example of a relapse below, not malaise: These are classic signs of ME.
An individual who is short of breath just speaking, eating, drinking (who wasn't before exertion and remains so).
An individual who cannot sit up or speak (but was able to talk at length most days for house before).
An individual who's heart rate is 130 standing (and wasn't the week before exertion).
An individual who's lymph glands are enlarged (and weren't the week before exertion).
An individual with a flair in endometreosis/prostatis/bronchospasm (that wasn't there the week before exertion).
An individual with repeat URT infections (that wasn't there the week before exertion) and now plagues them.
An individual with postural hypertension with narrowed pulse pressure (that wasn't there the week before exertion).
An individual who cannot dress themselves, wash, or eat (who could the week before exertion).
And individual with crippling vertigo caused by walking or standing (which wasn't there before).
And on and on... This is what ME does to people. Something the CDC are in complete denial of:
(See their website:
http://www/cdc.gov/cfs).
Those with symptoms of organic ME are not undergoing a post exertional SEID 'malaise', but an inflammatory immuno reaction which the CDC and IOM say they can find no evidence for so took inflammation out as a requirement to have SEID or CFS. 
. As I said, they WOULD have had proof had Montoya's paper not been blocked. The one he said was ready in about 8 weeks, 12 months ago.
All ME CFS research is never going to study severe ME sufferers more accurately, unless the CRITERIA are more stringent. (The IOM are proud over creating an equal criteria to British CFS/ME! An inadequate state invented condition, that has utterly failed since it's conception by the British health service, the Department of Health, to help those with ME).
Statistically, researching ME is impossible if using Fukuda or SEID diagnostic criteria.
The ME International Consensus Criteria were developed (ME-ICC) to overcome this hurdle. BUT American government health agencies rejected ME-ICC and even rejected CCC CFS (SEID is diluted CCC CFS), and wanted a
fatigue based criteria identical to the British (CFS/ME) set up in their National Health Service (NHS) socialized health care system, just with a new bleached teeth smile for the media. SEID has achieved that. CFS achieved that too. This is problematic when considering severe patients for research!
With CFS or SEID one's house bound illness could be a figment of their imagination. It doesn't mean it is, it just leaves room for it to confuse biomedical research findings. This prevents quality biomedical research, prevents effective treatments and prevents the severely ill with ME recovering as they are never studied fairly.
After 46 years of being neglected with a 'recognized neurological disease' (ME), we know the drill.
The drill is American leadership in ME denial, with the British close in line ready to offer their 'exercise' experts to take up an 'advisory role', which is why the CDC and others, have literally, copied and pasted British CFS psychobabble onto their American websites about CBT and GE for American health agencies.
Does anyone seriously think a CDC who says the following, is going to select people with neuroinflammatory ME CFS who are homebound?
CDC CFS website....
''Graded exercise therapy (GET) has shown to be very helpful to some CFS patients''.
No
scientific evidence exists for this CDC statement.
''Adjusting and coping with the realities of CFS are important to feeling healthier''.
No
scientific evidence exists again. No studies have been done on patients with
evidence of organic inflammatory disease who have CFS diagnosis who have adjusted and coped, to see if they are healthier, because: What does ''feel healthier'' mean. How do you quantify it? Again, no science needed if we have engaged in a form of medicine where subjective 'feelings' is evidence for a therapy being touted as beneficial.
''If activities or exercises are not spread out, a "push - crash" cycle will occur. "Push - crash" cycle is when a person does too much all at once, crashes, rests, starts to feel better and does too much once again''.
Where is the proof, that 'spreading out' activities prevents a crash? Define a crash medically or scientifically? What are the CDC criteria for a crash? None are given, it's entirely subjective without biomarkers. The Push Crash theory is a direct copy of the British psychobabblers who believe in the self delusional myth that patients
behavior (doing too much) leads to set backs. The science, says the immune system leads to set backs, not 'doing to much' in a push crash cycle!
I would love to swallow humble pie, but don't wait up for it. (Cytokines are also elevated in stress and depression, and
Dr Hornig is a psychiatrist so may be looking to 'prove' that CFS is a neuro-psychiatric disorder in response to to 'X' - X being anything, including an infection and genes). I'm sure certain criteria CFS
are a neuropsychiatric condition, but CFS/SEID isn't ME if the diagnosis shuns muscle pain, cardiac, autonomic, endocrine and CNS inflammation as a requirement for having it.
If the IOM say SEID is ME, then it needs to be ME.
If the CDC severe CFS research claims to be relevant to ME, then it needs to be relevant to ME historically and diagnostically.
So any CDC research on 'severe' should mean displaying the signs of severe ME, not having a CFS SEID diagnosis and being home bound. We know this won't happen, as it can't happen. They'd break their own diagnostic criteria of ''unexplained''. And there's the catch 22 of 'severe' research from here onwards.
