Everything about ME/CFS on the in the UK is 50 shades of grey as
@charles shepherd implies. What is on offer is patchy & of varying degrees of help
To dismiss every doctor & clinic in the UK is wrong and misleading. GET is clearly unsuitable but a good occupational therapist should know this & talk to you about pacing.
@Braveheart do your own research and be wary of listening to anybody pushing their own agenda too hard (as you would in any making any decision)
You will find sensible people like
@trishrhymes who offer sensible pragmatic advice out there based on their own experiences rather than hearsay & gossip.
It is equally misleading for people one might see online in various 'blogs' or Facebook etc to suggest that OT helps the disease ME, or indeed any disease process. ME patients, need powerful drugs, not OT to manage their disease.
Over the years, to stop myself being misled by confused bloggers (claiming to be 'patients') who spread disinformation (such as the NHS website does on treatments for CFS/ME) claiming that ME patients have 'Specialist Clinics' to go to. Well since this, I discovered these clinics have no treatments (by visiting them in person)
I do my own research and
do listen to the confused people, but realise too often, they are pushing their own pro psychiatric agenda, due to the fact they are mentally ill with Chronic Fatigue, (find CBT, GET, PACING massively helpful) but like to use the word, ME, to hide from themselves of their families, because....
For some reason they find it shameful to accept or tell others, that stress, burn-out, University, family bereavement etc made them feel run down, and they thus feel shame and hide within ME CFS to never let on, I don't feel shame having a mental illness at all. I suffer from Anxiety as a consequence of a neurological condition (POTS) that causes inappropriate anxiety and also because the NHS have abused me in Hospitals (as an inpatient) that has lead me to be too scared to leave my own house for years. So like some with ME or CFS, I have the core disease with additional mental health issues (from 30 years ill) on top.
Why is it important to delineate primary and secondary effect mental illnesses in chronic disease, such as subgroup 1 who loves OT and subgroup 2 who claim it useless? Because, there are people with pure mental health issues (I have met many) who don't have primary ME CFS and only mental health problems. These people have hijacked the condition, and cause great problems for ME CFS patients in society,
due to their refusal to accept the stigma of mental illness - what Wessely mistakenly claims
all ME CFS sufferers do.
Example of how mentally ill people hide with Organic CFS and ME labels - advocating for innapropriate therapies with no evidence base:
'Sensible', must be based on fact, if,
not being sensible is based on fiction.
Anyone, be they a scientist, doctor or patient claiming CBT/GET/PACING ''works'' for CFS/ME, is not based on fact, but fiction - as the evidence is anecdotal.
I can claim tomorrow I consumed HIV drugs for 3 months and believe due to this, I am 25% better, but this is fictional (to science) until I proven this in repeated research studies, in people with my level of disease and disability. I must also demonstrate what I mean by 'better' by using assays (blood tests) or other such measures, not just my own interpretation of 'better' on a questionnaire.
What can we conclude from this? It doesn't matter what area of medicine a therapy for ME CFS is (CBT or Intravenous drug therapy) it matters where there evidence is coming from, and how it is being laid out as a 'solution' for disease management or treatment.
Why?
1) No scientific studies prove the existence of ME CFS as a diagnosable cohort. This is a nightmare.
2) None of these cohorts proven to have ME/CFS (impossible due to no test) have been given the therapy of CBT/GET/PACING/OT and never can be, due to point 1 + 2 , converging.
There is thus zero scientific evidence that CBT/GET/PACING or OT has any effect on the disease process of ME CFS. Yet these are the 'treatments' on offer at 'specialist CFS/ME clinics in the UK. An OT is not a doctor and cannot manage chronic disease safely. OT's should not be seeing ME CFS patients in these 'specialist CFS/ME clinics unless they're debating a home situation that requires some drastic improvement, which doctors cannot offer. In Chronic disease, (unless the disease is progressive) this is usually done at the start of the illness and OT afterwards, is pointless:
For example:
All an OT can offer me is a 'grab rail' so I can have a wash in the bath. To get a wheelchair in the UK, you have to liaise with 'the wheelchair service', so an OT can't even do that. OT does not treat my disease, it gave me access to dip my bare behind in a tub once a month (hygeine) and thus OT isn't affecting my disease process, unless you are coming out of Hospital (as I was) and need your bathroom adapting. (People don't attend outpatients clinics for that though and arrangements are made prior to discharge).
So in conclusion.
UK CFS charities like the ME Association curiously have appeared to claim there is 'treatment' for ME at Specialist UK Clinics, but this is unsound advice when investigated to be correct or not.
There is not a single evidence based treatment for ME CFS globally, never mind the UK.
NICE claiming something is evidenced based does not make it evidence based.
The 'evidence based' treatments that these UK CFS/ME 'specialist' clinics use, is based on the NICE guidelines, which are based on FRAUD from near identical 'therapies' in infamous PACE trial - CBT/GET. PACE has null effect. This means it cannot be recommended by NICE or anyone, including AFME and the ME Association or you or myself.
When any UK CFS charity says ''our members find therapy X useful'' - you have to look at this logically, when these charities appear to be defending CBT, or PACING:
*Clicking a radio button on a Charity website does not make you an authentic patient. Feedback is not verified as accurate. Anyone can claim to be a CFS patient and tick 'CBT helped me somewhat'. This means nothing, the person ticking the box is a stranger and unverified as genuine.
*Joining a CFS charity and claiming you have CFS or ME diagnosis is not checked by the Charity. Anyone can lie and impersonate a patient. This is the same for all charities who do not require patients to send in their GP name an have the GP confirm the name of this patients attends practice Y, and is who they say they are. So again, this means ''feedback from CFS charity members' is not reliable evidence. Be it for or against PACING.
*What is an authentic patient, if no test exists?
*People with mental illnesses are misdiagnosed with CFS/ME in the UK, and globally also.
A UK CFS patients is NOT the same as an American CFS patient - critical point few people know:
A doctor in the UK commonly misdiagnoses ME (via the NHS tool of CFS/ME) because they redefined ME, via CFS/ME via patients going to the GP or consultant and reporting:
1) Feeling worse after doing something (PEM) with no evidence how they feel worse required.
2) Have one or more symptom + unexplained CF (All that is required for UK NHS CFS/ME diagnosis)*
*Does not fulfill the criteria for CDC CFS, or WHO ME.
This means UK 'experiences with psychogenic therapies (CBT/GET/PACING) or home help (OT) mixing with CBT remain irrelevant to ME or organic disease CFS, because they fail to meet the diagnostic criteria of CDC CFS, CCC CFS, ME-ICC, or Ramsay ME.
This is not personal bias or conjecture, but fact:
No UK CFS/ME patient has an American disease or syndrome if they don't meet the criteria for the established disease or criteria used in research (Fukuda criteria). British CFS/ME patients do NOT match the USA CDCdiagnostic criteria for CFS. They are a different group of people, including the mentally ill - as are Fukuda CFS. This is important, as some people with mental illness, find CBT/GET/Pacing/Counselling naturally far more useful than those without mental illness.
Conclusion:
These multiple factors all need to be taken on board, where having personal ideas if non evidenced based therapies in 'specialist CFS/ME clinics' in the UK allegedly help 'some people with CFS ME or not.
So when reading
any CFS or ME charities pretty websites or spokespersons, or patient representatives reporting ''positive recovery or management stories'' we need to remember we don't know
who the people who find these 'therapies' beneficial are,
and if they even have an organic disease in the first place. Thus, ultimately, their experiences are irrelevant to wider science and medicine and specifically to biomedical ME CFS research.
American and European researchers and deciphering what ME is NOT the UK'S MRC:
From recent research updates from Fluge & Mella in Norway, and American researchers such as Hanson/Davis/Navieux it is increasingly clear that increasing activity (with whatever therapy)
worsens the disease process as organic CFS affects metabolism
Misdiagnosed patients who 'feel better on CBT' evidently don't have organic disease based ME CFS which is a huge elephant in the room and they must be removed from the biomedical research arena with great haste, as they create statistical anomalies that slows down other countries biomedical research, as the numbers of positive effects (from drug therapies) are artificially lowered by Wessely and Holgate's preferred 'broad' CF criteria, not narrow, that would have better defined ME. The same tragic situation would occur if people with chronic EBV were not responding to HIV medications, and this held back treatments for AIDS using proposed HIV medications due to deranged criteria in use. This is not the fault of the CFS patients in any country, mentally ill subset or purely organic. It is the fault and responsibility of medico-politics who intentionally created
broad based fatigue research criteria, what the UK MRC is now calling for. Making themselves even more responsible for patients nerve damage (neuropathy occurs from untreated chronic infection and inflammation) and deaths (subsets of ME CFS sufferers die) than they were already with the PACE trial fraud.
CBT, GET, PACING, OT and Counselling have no place in management or treatment of ME CFS and are dangerous for anything other than the obvious (home adaption, mental illness treatment in some).
Autoimmunity research, drug therapy, anti-inflammatory, anti-viral, ant-retroviral, anti-microbial agents are critically needed - once research shows us which was to turn.
Biomedical research is the future of ME CFS- not superstition and supposition of researchers attaining (weak fatigue criteria creation) and colluding (questionnaire based therapy outcomes) with the mentally ill who don't have ME CFS hence they recover, what others relapse on, or even die on.
Terminally ill patients with ME CFS will die on the 'Evidence Based' NICE approved CBT GET PACING OT Counselling - because they have an unmet medical disease that desperately needs medical interventions.
