I find it sad that human beings lash out and trash things with so little evidence. You want to trash something so you find evidence that fits with your agenda.
The CBT approach I received was about accepting my own limitations, because in doing so, I learnt to pace myself rather than constantly pushing myself past my limits.
I was diagnosed using the Fukuda criteria; they thought my illness was probably triggered by an episode of anaemia. The Leeds service helped me accept that CFS/ME or ME/CFS is a real illness, certainly not the other way round!
Yes, it sits within the psychiatric service and that isn't at all helpful, but the staff I worked with understood that. The NHS has many, many problems. People who work within it are underpaid and under appreciated. Calling them jobsworths is really unhelpful.
Hi there. There seems to be something you don't know, that is totally understandable as I'm sure no one told you, as no one told me either, I had to find it out by being abused in NHS hospitals, on multiple occasions.
*
CBT in disease is normal. It helps patients cope who require it (many don't). CBT is only given though in disease to people who require it it is
never a mainstay of treatment.
Vs
*CBT in CFS/ME is the mainstay of the entire treatment. In CFS/ME with the NHS in charge, it's about denying your ongoing disease process of
active infection, inflammation and muscle damage. It's all in the NHS literature (published) and online. CBT GET in ME, is thus a form of approved abuse, because the patient relapses on the therapy advised. (As they would in Lupus, MS and any other inflammatory disorder).
If you didn't know, you need to go look up 'Bio psycho social theory' + 'CFS' if you're able.
This is known as BPS. BPS has been
completely discredited as an effective form of disease management in ME, and also now (via PACE) psych classifications of chronic fatigue states (F48.0). Thus it needs to be stopped, or the patients are being misled.
So there is a huge difference between how CBT is used in wider society for other physical conditions,and how it's targeted against disease denial in ME. Not al patients know this, especially people only sick for decades or multi decades.
It is clear from your answer, we have differing experiences. I am glad you find your experience helpful and hope you recover. Many patients start of with mild to moderate ME CFS, but then get slowly worse and worse. No CBT will ever stop this, due to the disease process.
ME like MS, will likely have many subsets.
Below is a discussion on the system, and how the system created UK 'specialist' centres in 'ME' that aren't:
The system of NHS care for 'CFS/ME' is blatantly corrupt, as
the system is not based on science but what is called medico-politics. Medicine and science are
meant to be joined at the hip, yet when science falls away from medicine, corruption can only flourish.
Because I met corrupt people, highly influential, they destroyed my life and others with ME. They only managed to do this, with a theory. Biospsychosocial theory of CFS explaining 'ME'. ME is actually a disease that existed long before the CDC created CFS in the late 1980's. ME is a neurological disease, not a syndrome of unexplained fatigue. If CFS had never existed, I wouldn't give a damn what happens to CFS, or what 'centres' do. It would be none of my business, in the same way that I am no interested in bi-polar or depression treatment. Because I was harmed by doctors, using BPS theory of CFS, I now make it my business what happens to other people with ME, who like me, were either kids when they got abused or simply weren't aware.
The internet has educated patients. The internet didn't exist when I was diagnosed. I had no idea there were other people like me, because I was told, repeatedly, they'd never seen anyone like me, and 'ME' is ''ultra rare''. They lied. Because I believed them, I spent over 10 years never trying to meet other people, even though I was bed ridden, because, remember, I was told there was no one else like me. If I had, I would have had friends, I still don't have friends now, because I was so young, I never finished school. I thus don't know anyone in my life, on-line or otherwise. The concerning point here, is I am not alone. Many people will now be like me, in care homes or looked after by elderly relatives or parents who when they do die, they will end up in a care home anyway. This is only happening because there is no treatment, and the responsibility lies with the government for failing to fund adequate biomedical research, because they followed the lies of psychiatry. End of debate. Psychiatry created CBT GE for CFS/ME. Not cardiologists, not immunologists, but people who say ME is a ''myth''. CBT GET is thus based on disease denial, extremism (denying potentially fatal disease is pretty extreme for a doctor) and bigotry.
My fatigue is explained. Everyone else's could be too on this forum who has moderate to severe ME, if they were granted a simple test. A TILT test. I have severe autonomic dysfunction. Autonomic dysfunction is very common in ME patients, but NICE refuse to screen for it, when diagnosing CFS/ME in the UK.
Clinics 'teach' patients to 'recover', by the denial of ME (via BPS theory of CFS). That is fundamentally wrong, as it won't work and has no evidence based in double blind placebo controlled trials (Impossible for a psychological theory to utilise this, unlike a drug trial).
CFS practitioners, unintentionally, may become like priests. They preach a gospel, a belief system of psychiatry, blind faith. Those 'helped' by CBT with neurological ME are the minority, and people 'helped' with GET don't exist, because if a person can perform GET and never relapse they don't have an active disease process, or it's' in remission and may come back at any time and then relapse them (too late then, as there's no treatment to reverse it).
The reason CBT doesn't work for organic CFS and ME, is that like MS, Lupus, or HIV - our disease won't react to altering 'beliefs' that aren't there, as our 'beliefs' are actually normal.
These 'happy' specialist centres for ME CFS in the UK are in denial of what ME does to the human body. (
Not one 'specialist' CFS/ME' centre with a pro CBT GET agenda, educates patients about serious medical conditions found in ME such as: Cancer, Epilepsy, Heart Failure, new onset Asthma in any literature). Subsequently, the severely affected ME sufferer can only despair at the ignorance of these 'specialist' CFS/ME centres, due to the therapists complete ineffectual ability to treat the condition, because it is nearly always a psychiatric mind-body based (CBT + GET = do more and feel better = a scientific fallacy) plan of action.
There are women with ME with gyne disorders, still told their condition is in their heads! These women can't get pregnant or live in dreadful pain (inflammation) and need operations, and still, no one can put two and two together and think WHY is this happening. Why are males with ME, besieged with prostate pain. If this was done, it would, of course, expose the lie of CBT GET to 'treat' CFS/ME. Clearly, ME is an inflammatory disorder, linked to numerous chronic infections, and/or autoimmune disease. Hence CBT GET doesn't work! So why are patients being told it does? Because of the clientèle who go to the clinics. They aren't people ruined by ME. Once you are ruined by ME you won't be going to a clinic, to be told you need CBT GET. You'll be going to a neurologist to be told you have severe neuropathic pain and put on Lyrica or Gabapentin because you have
nerve damage. That's not ever told to the NHS patients either. Why not?
Why can't a claimed specialised centre, be up to the job and actually be specialised? Why is that so much to ask for?
Because it's not their remit. Their remit is to de medicalise, via CBT GET. Are MS patients given GET? Diabetics? Cancer patients? Nope. They are given drugs, not mind-body theories of functional somatic disorder that is 'real', to the patient, but not to science of course.
The NHS like to 'teach' ME patients in these centres they don't have a life ruining chronic disabling disease process. Well guess what? ME is a chronic disabling disease process with no proven treatment - hence, at least 1 in 4 of the patients are housebound and bedridden. Hence these 'centres' are an insult to people with genuine forms of the condition, because they won't improve on CBT and GET, they will relapse because their mitochondria are exhausted at rest, and they experience high levels of oxidative stress (metabolic inflammation) never mind when they move around.
ME is an energy disorder, patients are exhausted at rest, because they have a disease process making them so and your mind, cannot defeat this - this is the basis of all disease, that is separate from psychological conditions. The disease ME, only worsens by doing activity, and even sporadic gentle activity and infection leads to relapse in ME, because this is how the disease works biologically. End of story. Any 'professional' who tells patients otherwise is either lying, or literally hasn't read the research (most probably).
The people worse than me are now deceased, via their disease process. I have been very ill in hospital with ME many times, mostly my heart. I do not have a 'heart condition', I have ME. And that is worrying when the NHS are in total denial that cardiac arrhythmia's in ME are common. Cardiac arrhythmia's can kill people (VT, AF). If my parents hadn't rushed me to hospital, if I lived on my own, I would have died. The NHS would have killed me, via following the deranged mantra of psychiatrist who produce 'evidence' that ME is fatigue, and couldn't possibly be fatal.
The NHS never tells people they can die from ME CFS, and they never tell people they cannot give blood, they also don't tell pregnant women that the putative agent of ME CFS is transferable in the womb (hence new mothers donating their umbilical cord, who have ME CFS, is banned in the UK). Clearly, ME is a autoimmune infectious disease, or an autoimmune, post infectious disease with concerns over transferable proteins (prions) and so forth. Otherwise these bans wouldn't be in place by the National blood service in the UK!
All of this nonsense of concealing the very serious nature of ME, from me, has ruined my life and tens of millions of others. CBT and GE theory, has ruined my life even more so because I went from moderate CFS to being in Hospital and abused by psychiatrists who win awards for their services in how I was treated.
I predict the universal role out for CBT GE in the UK, will be illegal within years, due to the changing political picture of what ME is, via realising that CFS is NOT a biopsychosocial fatigue disorder, but a collection of conditions, some being potentially fatal. Autoimmune disease kills people and immune suppression kills people, as do infections and inflammation
Sadly, the terrible human costs of the NHS rolling out 'bio-psycho-social-theory' could have been prevented. There never was any evidence for CBT and GE in CFS/ME using science as the decider, not personal hypothesis of those who deny ME exists - what the NHS backs. This is not my opinion, it is science fact. Not one scientific paper exists supporting CBT and GET in ME, there is only weak evidence in some people with unexplained chronic fatigue, with depression not excluded, using alterations in questionnaires as proof - only patient beliefs! That isn't science.
Science measures oxygen changes (VO2 max testing), Science measures inflammatory markers (Cytokines and Chemokines) and Science measures blood flow. This means using CBT to patients for organic CFS and ME, be it Leeds NHS or anywhere else, in any country, to
reduce symptoms of organic ME CFS is madness. Why?
In medicine,
there must be an evidence base, before co-ercing members of the public to undergo a therapy, as 'safe' and 'effective' (the lie sold to CFS ME patients worldwide by psychiatrists, and in socialised medical care systems, such as the UK).
No safety tests have ever been done in people with organic CFS and ME to prove GET (via CBT) is safe.
When papers in 'CFS' are published on 'harms' of GET, theses are
not performed in people with cardinal symptoms of ME:
Cardiac dysfunction
Breathing dysfunction
Hormonal dysfunction
Muscle dysfunction
Brain dysfunction.
Low blood volume.
Autonomic Dysfunction
Neurological Dysfunction, such as: Cognitive Dysfunction.
The most severe CFS and ME patients, can have profound autonomic dysfunction. Severe autonomic dysfunction, makes it impossible to undergo exercise, irrespective of PEM. It will destroy your life, and CBT and GET will be utterly useless or make you relapse. No one can argue this, because autonomic dysfunction is an exclusionary criteria for CFS, but not for ME. (Orthostatic Intolerance is part of the suggested SEID - OI is just one component of autonomic dysfunction).
This is why it's the NHS's fault, for foolishly placing people with autonomic dysfunction such as POTS, and insisting they don't have POTS (the NHS refuse to give TILT table tests) but they have CFS/ME, treated with CBT and GET!!!
It's heart breaking that teaching hospitals can push such BS, but this is politics, this is cost effectiveness in action, and this is socialism failing. Everyone gets the same, for the cheapest possible price, paid for by tax payers. No choice. No difference. No escape from psychiatry.
The inevitable conclusion of CBT GET in organic ME and CFS:
The 'therapy' used in the NHS, for people with organic CFS or organic ME becomes a case of apparent fraud sold to desperately sick and vulnerable patients of which a large percentage are free from mental illness. This is not the fault of clinicians, it's the fault of NICE who refuse to use a TILT table test to screen for POTS, which thus provides neurological explanations to have the symptoms of ME or CFS - and not a psych reason, which is then enforced with CBT and GET. The wrong therapy, and thus potentially dangerous too.
There is no evidence CBT or GET works for CFS, never mind ME:
The large scale European equivalent of the PACE trial (forget which country, Belgium/Holland?) failed. It was so bad it was never published. That is bad enough, until you see what the UK did, using the media to celebrate how wonderful the results were by being selective with the figures. (On closer inspection, the results for PACE were very poor).
The PACE trial selected non ME patients (F48.0 Psych criteria), and they still failed to show that patients 'altering beliefs', improved with any real effect- that is a big fail, especially as it cost £5 million of wasted money. In fact, the researchers themselves later admitted that 'recovery' in CFS (in their terminology) includes to become worse! Imagine if I sold you a pair of crutches for a broken leg, stating they were 'safe' and 'will aid your walking', but then later say, they might 'break' and you might 'fall over'. I'd never be allowed to sell that equipment to any hospital. So why is GET allowed for ME? (Because the NHS insist ME = CFS). That's why.
Thus people being sold CBT are being tricked by the NHS, that the therapy has a science based evidence behind it.
This is not my opinion, it is science fact. The bottom line is no scientific evidence exists, that CBT or GE 'works' for people with ORGANIC based ME and ORGANIC based CFS, as no ORGANIC tests are required to be diagnosed with CFS/ME. Thus if you screen who you think will have psych CFS, then use psych criteria (as happened in the PACE trial), you can mostly weed out genuine organic ME or CFS sufferers. Even though this was done (unethical?) it was still a failure.
So a failed hypothesis was demonstrated and this hypothesis is still in use at the 'specialist' CFS/ME clinics. That's not acceptable to medicine or science. Naturally, the patients are furious no one cares, but the patients are powerless. They are mostly unemployed, poor and can't leave their house to protest, unlike newly diagnosed HIV patients could back in the day before they succumbed to AIDS.
It doesn't matter if it's Leeds or London based NHS doing this or the Martians, what matters is it's not science based, and medicine requires we follow science. As ME and CFS are not categorised as mental health conditions, using mental health therapy (with no evidence it works), is inexcusable and wrong, fundamentally wrong, when a % of people with very very severe ME, actually die from their condition.
People die from ME, because they aren't researched, as they aren't researched there's no treatment, with no treatment you cannot halt the disease process in its aggressive form. It's luck if a patients has a progressive form of ME, or not. (the same goes for MS). So people
are dying from ME ultimately, because there is a lie, sold to global health care systems (and private health care, especially in America) that ME = CFS and CFS = Chronic Unexplained Fatigue State = benign =no real problem.
All of this, is due to psychiatry and their CBT GET ruse to 'treat' CFS, whilst claiming ME doesn't exist. Psychiatry stole two decades of funding. What happened to subsets of patients in these decades? Have a think where they are now. They aren't with us any longer. Psychiatry killed the ME patients, called CFS, never believed, so never treated as there was no drugs, and no drugs as no funding.
Well guess what, ''fatigue'' has nothing to do with ME. ME is a neuroimmune disease, 'fatigue' was dreamed up by people who
deny an infectious origin to ME or PVFS. To embrace 'fatigue'' as explaining ME is as crazy as embracing racism as someone who is a minority. ME patients are a minority too, and minorities are always treated badly, until they gain equality.
Science, not psychiatry gains patients their lives back, if they can stay alive another 10 years. As ME was first recognized in 1969 this is a slight problem for those who have dreams of 'starting' their adult lives, oneday!
ME and CFS will only gain equality, when apparent fraudsters who sold 'CBT to cure ''faulty illness beliefs'' are retired from the academic sphere and
real scientists are in the driving seat. Allowed to move in, to look at the chronic micro-glial-brain inflammation, the low blood volume, the immune dysfunction, the immune suppression, and the muscle weakness and tissue damage that inflammation causes. The latest biomedical research, mostly from America, shows that CFS is
worsened by activity, and that CBT is
ineffective because inside CFS, is a low grade chronic neuroinflammation, that is reactive to mental and physical exertion, and is also associate to a whole host of differing infections.
As I have been to a UK 'CFS/ME' specialist centre, I have my opinion, and as I have ME, I now understand why it failed. It was based on a lie. No practitioner should lie to a patient and they don't in the NHS. It's unintentional, they are doing it out of the goodness of the own heart, which makes it even more sick as the damage they cause, is not wanted but by accident.
What would think up such a thing to do to patients for 40+ years? I wonder. A very twisted
system that's for sure. A
system that needs a re-boot, new blood, and new ideas whilst preventing the old school, from continuing to wreak havoc. Not much to ask really, and so is the concept that these 'specialist' centres drop using CBT GET, that is not science based and can relapse or harm the patient. Time will change this, but we don't have time left as the kids are now middle aged and some are even elderly since contracting our disease, from infection.
