To the cost of tens of millions of patients worldwide, there is no evidence based treatment for CFS/ME anywhere in the world. No NHS hospital or clinic will tell you this, because they don't believe that. They believe exaggerated claims in medical journals by authors, based on non science (responses to questionnaires) in patients, reporting Chronic Fatigue, diagnosed without any tests!
Honest, biomedical CFS researchers (at this point in time) have failed, since 1988, to come up with a single science based proven treatment for CFS including the Americans, the world's most powerful and wealthy nation. This is the truth, and cannot be papered over by any motivational coach, CBT 'expert' or psychotherapist who tells you ''most people recover''. Your reply is, ''recover from what''? And then ask, ''what tests did they have, how do you know they had the same illness as me?''. Then they tend to go quiet, or they become hostile, as their therapy manual instructs them, patients who don't 'engage' with the therapy won't recover.
Convenient? Yes. In other words, ME CFS patients who don't accept the foolish idea from 'specialist CFS centers' in the UK, are made to be bad patients. This is my experience. Severe ME patients fail (due to the disease) and people who recover, don't even have your disease in the first place! Yet we are all told to re-think, beliefs, beliefs we don't even have and that we instinctively know is wrong: (Pain is good, being unable to breath properly is good, sneezing and getting raised lymph glands is good, tachycardia and low blood pressure is good, vertigo is good, increased seizures is good etc).
The symptoms I just wrote, are just a few of the pathological reactions in ME CFS, to increased exertion, increased brain activity or upright posture in POTS). This is due to the underlying disease processes (Severe ME patients likely have multiple, novel autoimmune diseases). We are promised this is OK, nothing will happen if you back off, and then try again. What if you never recover? They have then harmed you. You are rejected and leave a failure (this is my experience). Is that a therapy or is it harmful? It's harmful physically and psychologically as you are made to feel a failure, by these 'specialist centres', who naturally now you are housebound from GET, can't help you! They've hurt you, and have no abily to reverse what they've done!!! What I learnt then, is instead of apologizing, they blame you, call you a somatizer, say you don't attend follow up appointments etc. This causes worse doctor patient relationships with your GP, who then insinuates, you aren't trying hard enough. That is bad practice, but inevitable. No tests are in place, no patient can 'prove' how sick they are, we are at the mercy of empathic doctors. Try and find these routinely when you're severely affected.
There is nothing you can do as a patient in the UK to recover using medical drugs (NICE guidelines warn against biomedical drug intervention, such as anti-virals),to stop this flood of symptoms, until there is a proven drug therapy. This requires years, decades of biomedical research, looking at the correct group (subset), not a wide, unrelated group of people, told they have something called 'CFS/ME', using no tests. (That isn't medicine or science, it's guess work).
The only evidence on the effectiveness of CBT/GET in mentally Ill patients with Chronic Fatigue (Not CFS/ME), diagnosed using psychiatric F48.0 coding, NOT G93.3 coding, failed to demonstrate any benefit, it has a null (zero) effect. This was demonstrated in the now infamous £5million PACE trial, arguably which should never have been funded by the British public.
On the basis that Chronic Fatigue psych criteria patients (F48.0) who were hand picked by psychiatric field researchers, patients who included people with active depression (should be excluded from a diagnosis of CFS/ME), failed to benefit from CBT/GET, demonstrates that when used in a non mental illness like ME or severe ME, the results will be even worse, as then you have a biological disease on top, of F48.0 Psychogenic Chronic Fatigue!
The current non evidence based system, the UK NHS system has in place, be it at Leeds NHS (or anywhere else) is based on the fraudulent BPS theory of ME as Chronic Fatigue caused by ''fear avoidance'' (ideas of de conditioning explaining the symptoms), and can be 'overcome' by positive thinking, sleep hygeine, and avoiding stress, is so laughable, it's actually scary when you consider what untreated autoimmune disease and infection does to the human body, over decades in ME sufferers. (Causes irreparable damage to tissue, bone, blood vessels etc). Also add in pelvic inflammatory disease in females, development of multiple allergies, including MAST cell disorders, and the whole situation is just terrible.
That is why it's critical that people with biological CFS and ME, challenge the doctors and therapists who force them (coerce them) into potential further suffering, by misleading the ME CFS patient, that CBT/GET therapy is proven, and evidence based. It simply isn't! These were claims made in the 1990's by psychiatrists, that sadly, became part of the British NHS system via ME being drawn into 'CFS/ME', on the orders of the UK Department of Health, they themselves, influenced by Anti ME and Pro CFS Psychiatrists (they lobbied multiple government departments, including the social security DSS (now DWP) telling them not to allow ME to be seperate from the new idea of 'CFS'. Despite these henious acts, there never was any evidence for BPS theory CFS as explaining ME, or even explaining G93.3 CFS, shall we say, CDC CFS. The entire idea of BPS theory 'CFS' equating to ME is made up, manufactured.
At this point in time in history, if I was a person with ME CFS being advised and assured that CBT/GET at any NHS hospital trust facility is ''safe'' ''effective'' and 'reduces'' symptoms, I would get this claim in writing (ask the clinical lead to sign the letter) and then give this letter to a human rights lawyer, after making multiple copies.
A person willing to act as your advocate on a medico-legal basis can then right to any hospital who copies the fraudulent claims of the PACE trial (on review, it had a zero beneficial effect), and demand scientific evidence that CBT/GET is effective (the opposite of PACE), and that if they cannot and will not provide you with this evidence (They can't as it doesn't exist) they write the patient a letter of apology, explaining they misled the patient into an unproven and experimental 'therapy' with no scientific evidence in place, to back up the claims of it's efficacy and safety.
Until patients do this, many children and adults will continue to be hoodwinked and sold a false therapy, which in subsets of patients with severe disease, could eve be fatal, because the message is to ignore your symptoms and to ignore them, you need CBT to alter your mindset.
For a neuroinflammatory disease, this is very dangerous to the patient. In the future CBT/GET will be outlawed, when it is provided on the basis that the diseases inside CFS and ME, are ''maintained'' by the patients beliefs, and lead to doing less, due to ''fear'' of activity. That is why CBT/GET was introduced, it wasn't introduced (such as with heart failure or cancer) to be given to a few select patients who develop maladaptive coping strategies, it was introduced by psychiatrists who said the disease ME was a ''myth'' and that there is no disease process keeping patients sick, and what keeps patients sick is their ''fear'' of exercise.
In this day and age, that is quite bizarre to believe that, when over 5,000 published biomedical research papers on 'CFS' disagree, and when over decades, in the worst cases patients with ME, Lyme and CFS sadly die from the untreated and unrecognized crippling disease.
Thus CBT/GET to ''treat'' the condition by allegedly ''improving symptoms'' is not only scientifically redundant and dangerous, it' also a gross insult to patients, and patients whenever possible, need to calmly but assertively make their feelings known, to any health care systems that hand out CBT/GET, as if it was a safe, harmless therapy for all.
I did this years ago and yes, they failed to sign any letter that stated they were confident of their claims! Think why they refused, because they knew all along, the whole thing was hogwash, and were not confident that their claims of CBT/GET were safe, effective and had no risk. Hence, it should not be prescribed, only in patients who have developed, mental illness and actually are operating much lower than they should be.
In all my years of illness, all the patients i have met live within their boundaries, and work at their optimal maximum energy window and require no 'training' and don't need to 'learn' how to do anything, because they know their own bodies, and know their own limits.
GET for a patient working at their optimal energy window limit (as we all do, as we are biologically ill) pushes patients over their limit, leads to increased symptoms and relapses (lasting months or years) and is thus a form of medically induced punishment for not being believed. No different than prescribing coca cola for diabetes actually.
MS patients aren't prescribed CBT/GET to treat 'faulty illness beliefs' that MS is maintained by avoiding doing anything because the MS sufferer has chronic fatigue and disabling symptoms, so it shouldn't be prescribed for ME either. In psych CFS, it didn't even work (see PACE trial null effect) so it shouldn't be prescribed to the mentally ill either, only in exceptional cases if a person was known to be totally recovered or well, would CBT be safe to prescribe. Yet with no test for ME or CFS, how do we know how ill the patient is? And that's why it's so dangerous to use CBT/GET, because no one knows how the body will respond, how long relapses last, and what the effect will be.
We need to do more research and throw away the idea that people with ME CFS are exhausted, because they think they are (due to phobias and avoidance), this in itself, is a form of medical discrimination and should be prohibited.
Hopefully one day, but hope is not enough, we need funding for biomedical research and for the little we have, not to be siphoned off into 25 year null result mind-body therapy.