Here in Canada I have the choice between group therapy and going out of country for treatments. Which one do I pick? The choice is simple. I do not need group therapy, nor do I need to learn relaxation techniques, or how to exercise myself back to health.
These folks at the clinic while they may mean well, have no clue about what I need. I need treatments. I need my health care systems to give a shit about what is going on in my body and to give access to testing and treatment. This is called practicing medicine.
Very well worded. Patient choice 1st, Politics 2nd etc, but that's how ethically minded people think with a brain!
The UK's obvious caution over changing the old boy network ownership of CFS/ME as a mind-body illness into an Autoimmune Disease, is a big problem because of the
history they have to this day. One of backing disease denial, as evidence based medicine. (CBT to change alleged beliefs in untreated disease + GET to prove, the patient can do more and isn't actually biologically disabled after all). That's the cognitive behavioral approach to CFS claimed to be harmless, always known to be useless.
Using sequential logic does not apply to the use of Rituxumab in UK for the state, so all we get is silence and no action. Putting alleged 'Functional Somatizers' on immune therapy goes against the NHS communist regime's ideal of 'cost effective'. It also risks embarrassing the state, if even 10% of people respond, because these people will sue for damages, having being told they were mentally deficient and handed a therapy (CBT/GET) which failed in the PACE trial even for those with F48.0 Chronic Fatigue only
- Hence no PACE trial raw data and no paper retraction will ever happen, it cannot do politically. Politics created CFS after all, not Science.
Instead, blaming patients with neuroimmune disease is
much more cost effective for any Government. CFS patients then can be denied all funding for medical care for life and so instead, have to be looked after by their partner or parents and it won't cost the state a dime - that's a huge win for the state. This is why, of course, the psych lobby are awarded in the UK (not struck off) for their 'services towards CFS' - by destroying the legitimacy of patients suffering organic disease, untreated. By disease denial and propaganda they have saved the UK, and other countries with tax payer (free) heath care, billions and billions over the years.
This is why they don't want any patients in the UK having ANY ground-breaking drug that validates their disease as organic because if they respond well, they will tell everyone on social media and the press, and then, potentially, millions follow suit. Why risk that, if you can stop any study, by simply refusing funding? So that's what they did and what they do out of habit. £5 million on PACE trial £0 on Rituximab. This is presumably called a ''collaborative approach including everyone''.
Recently, a UK MS study looking at HERV's using Anti retroviral drugs (which found a benefit) now won't be rolled out across the country due to cost - it also risks 'CFS' and Lyme patients having the same test and testing positive for HERV's. MS can thus stay what it is, a big old mystery. Then, no one has to fund patients on ARV's for life. Simple. In USA and other countries private insurance would pay for the drugs if American patients had insurance, but the vast majority of people in the UK rely on the state for their health-care provision, as it's free at the point of use. Also in the UK, you cannot get insurance if you have a chronic medical illness, you have to sign up first (healthy), and then get sick! When you do, you are given the 'treatment'. For CFS ME, this is of course the ineffective treatment of CBT/GET. No way out of that one.
ME CFS and Rituximab is just a fly in the ointment as far as the state is concerned. As long as no one funds any drug trials in the UK for ME CFS at an infectious pathogen level (Lyme or HERV) or Autoimmune Level (B Cell depletion), the myth that ME CFS is a 'myth' can stay in place, CBT/GET stays, and nothing will change for a good 10 -20 years - saving masses of money and embarrassment for people currently at the very top of their profession.
So to conclude, putting the patients first, is not permitted. Comrade MUPS + PUPS + PPS ordered it after all.