Thank you for this information, it does look exciting.
The dream of a test that demonstrates why Rituximab works for a subset of people with Fukuda CFS would be a game changer. As we all are aware, because of how Fukuda CFS is diagnosed, B cell depletion cannot work for
all people with CFS, only those with undiagnosed organic disease affecting B cells. If proven, the CDC say these people cannot have CFS. Hence why Dr Kogelnik's apparent alternative ideas for labeling organically ill CFS patients -
Common Variable Immune Dysfunction (CVID) seems a wise idea.
One can guess these people are misdiagnosed Fukuda criteria CFS patients who should have been told they had ME, except the US didn't allow the word ME to be used because of private health industry who obsessed over the label of 'CFS', for reasons that now become clear. (Fukuda CFS traps patients into a dead end diagnosis and allows psychiatric theories of blaming the disabled and defencless, to flourish). A great way to save money on disability medical claims, including when not paying out insurance for GWS troops in the Army who develop 'CFS', after a batch of vaccines they get before going on a tour or duty, or during.
Patients who respond to Rituximab (or any other immune medication) are what logic often calls severe grade Canadian CFS or ME patients. (Cohorts that aren't permitted to be studied in any CDC or UK government research studies.....I wonder why?!). In fact, British psychiatrists reduced the CDC criteria to make it even weaker to make it far more likely that psychiatric fatigue cohorts would be included. They named this Oxford CFS criteria, designed by the Wessely School, no less. The same architects of the PACE trial in the UK. The very people who claim they are victims of a ''smear campaign'' by patients to ''stop research''. Research that is not biomedical, and not on ME sufferers at all, but is marketed as being so by 'influences' with the British media through the Science Media Centre (SMC). (More apparent fraud and possible collusion).
If such a test were to exist in the near future for demonstrating Rituximab effectiveness in CFS, 'ME' would then be legitimized medically because US CFS Fukuda and UK diagnostic criteria for CFS/ME
does not allow for any abnormal pathology to be present, ergo
the Rituximab responders likely have organic ME and certainly not 'unexplained' non biological chronic fatigue. CFS doesn't have any officially recognized subgroups (unlike other complex diseases with differing levels of disability). This was a great error in judgement. CFS could easily could have had a neurological/immune cohorts constructed years ago. This wasn't permitted by the US CDC, NIH & UK MRC and others. The evidence was there, over 5,000 biomedical papers have been published on the organic nature of dysfunction found in people diagnosed with Fukuda CFS. So there is no excuse, absolutely none.
There doesn't need to be a unique biomarker either for a set of organic symptoms to be legitimized, autoimmune diseases often don't have a unique biomarker of their own. (The cause remains unknown, hence it is called 'autoimmune'). Yet this is the non science based claim by CFS psychiatrists, that until there is a cause proven, their way of denying organic CFS/ME is better and their psychiatric therapy, ''safe''.
If there is some groundbreaking news from Dr Demeirleir the UK and US government could rapidly create CFS subsets in order to hide abnormal ME pathology because they
know that there are redacted MRC files that discuss ME abnormal pathology associated to likely situations such as possible contaminated vaccines, retroviruses and/or other infections. We already have quotes from UNUM and a vaccine manufacturer practically begging 'CFS' to be used in place of ME. UNUM's stated goal was to ''erradicate'' ME.
The UK's CFS psycho-behavioural models influence official health agencies recommendations to the public on how to treat CFS/ME. For example, the UK 2009 NICE Guidelines recommend not to give anti-viral drugs for CFS/ME as a matter of course. The CDC also recommend this. The two go hand in hand. In contrast to this obfuscation, CFS experts in the US, Dr Peterson, Dr Montoya and others, have sometimes found anti-viral drugs most useful!!! A lot of explaining will need to be done why health agencies ignored CFS experts in preference to organic CFS denialists.
There is a catch 22 for any government here though if Rituximab is to be proved as explaining an novel immune defect in CFS leading to symptoms. It would actually be easier for a government to ''allow'' ME to become a mainstream autoimmune disease rather than ''allow'' CFS to have an autoimmune subgroup. This is because the most harmful literature produced by the psychiatric profession, uses CFS cohorts. (The UK and US never did perform research on people with organic disease, only chronic fatigue and four symptoms in the US, or chronic fatigue, PEM and one or more additional symptoms in the UK). What is called CFS, or CFS/ME. So little data exists on ME (Myalgic Encephalomyelitis).
The patients will win either way, because their reduction in symptoms
without psychotherapy intervention, will prove claims of great effectiveness for CBT/GE to be scientifically flawed. Even worse for the US and UK government and their psychiatrists, we have the small matter that CFS or ME were never classified as mental health disorders. When claiming compensation from the government, this is a massive problem for the government because no excuse can be given that this whole situation was all a big 'mistake' and ''we thought you were mentally ill''.
No one can legitimately claim your CFS/ME symptoms are due to a mental and behavioral problem and treat you as mentally ill, as CFS/ME is not classified as a mental illnesses.
Once a drug is able to be used to reduce symptoms, heads will roll when fingers start pointing at the hidden members of health agencies who made the decisions to allow patients to be marketed as inferior members of society. It would seem quite incredible that in 2013 the whistle is blown so early. Something us patients presumed would be years ahead when Rituximab trials are completed in 'fatigued' cohorts with Fukuda CFS. (Clinical trials aren't even funded yet or planned by any government funded health agency).
Likely it is best we wait for actual science to be published before believing this sorry tale of disease deception (via CFS label) is coming to an end. Without drug trials and the apparent refusal of Ampligen by the FDA, this would seem most unlikely in the short term. When we can see a cutting edge scientific finding published, then we can start to breathe a sigh of relief that eventually we will have some form of health improvement through medications denied to use for over four decades, because of the automatic assumption that ME didn't exist, and CFS couldn't possibly include people with undiagnosed serious diseases.
Both of these psychological orientated ideologies are the medical error (and embarrassment) of our century when you consider that possibly millions of people have ME globally, and possibly tens of millions of people have CFS. If tens of millions of people have CFS, potentially millions have an autoimmune disease within this label. If potentially millions have an autoimmune disease, how many would have died from neglect in the last four decades because governments (lead by the US and UK) decided to evoke fantasy of the patients minds creating and maintaining symptoms?
When I think of the day there is a drug and some form of treatment, I always think of people labelled with CFS and ME who committed suicide, especially young people who never got into middle age and saw the world and experienced adult life.
And of course, the people who died of ME too who were neglected in society and never believed.
God bless them, and may they rest in peace.<3