Disgusting.
Yes indeed, I keep asking myself the same question. Who the hell
are these people?...
(
www.oxfordjournals.org/our_journals/innovait/about.html)
InnovAiT is a journal for Associates in Training (AiTs) of the Royal College of General Practitioners that promotes excellence in primary care and quality education. Rotating through the whole new curriculum for the nMRCGP on a three year cycle, InnovAiT supports and assists the learning and development of AiTs as they progress through training.
Text in full:
In this article, we outline GP management of chronic fatigue syndrome (CFS), the condition also known colloquially in the UK as ME.
Here we go...right from the off, the politics, spin, disinformation..."known colloquially in the UK"...PAH! So: CFS and ME are simply the same thing, then, eh? And "ME" is a "colloquial" name, "CFS" is the "real" name, presumably?
And we are invited to believe that this kind of spin is not deliberate misinformation and obfuscation...
I'm angry already...
The paper is based on National Institute for Health and Clinical Excellence (NICE) guidelines and also incorporates evidence-based strategies available to specialist services. GPs are well placed to make an early diagnosis of CFS and give patients helpful advice to manage their fatigue, hopefully avoiding multiple inappropriate referrals to specialist medical clinics.
So...I think we can safely assume that the entire document is lies, lies, lies from start to finish then? Nice guidelines and the old "evidence-based" swindle...and, well of course, GPs are
so "well-placed to make an early diagnosis of CFS"...I mean, everybody knows the truth of that, right? And of course they are just full of helpful advice to manage fatigue...how on earth do they come up with this stuff?
The GP curriculum and chronic fatigue syndrome GP curriculum statement 13: Care of people with mental health problems states that GPs in training should be able to manage patients presenting to general practice with a history of chronic fatigue or tired all the time. In particular, GPs in training should be able to:
Manage people experiencing tiredness in primary care, bearing in mind that several interventions may be effective, including different forms of talking therapy, medication and self-help
Describe the need to check for psychological illness while avoiding the habit of checking extensively for physical illness
Show that they understand that ideas about the physical, psychological and social should be integrated in both consultation and investigation of illness
Well now, let's get straight in there with "people with mental health problems" eh? Set the scene...
And we're now talking about "chronic fatigue" and "tired all the time"...remembering that "CFS" is the real name and "ME" is just a "colloquial" name...so we are (apparently) talking about ME here too...
Talking therapy, (unspecified) medication and self-help...hurrah!
GP curriculum requires this scandalous behaviour:
"Describe the need to
check for psychological illness while avoiding the habit of checking extensively for physical illness"
Criminal.
What is chronic fatigue syndrome?
The single common denominator in all patients with chronic fatigue syndrome (CFS) is debilitating fatigue that affects function and is worsened by activity, not relieved by rest, and causes substantial disability. Worsening of function is often delayed by 2448 hours, leading to the boom and bust experience. Instead of conserving energy on good days, people tend to overdo things, causing excessive fatigue over the next few days. Disturbed and unrefreshing sleep may then further augment the fatigue.
This stuff just leaves me speechless.
"Instead of conserving energy on good days, people tend to overdo things".
It's their own behaviour that's to blame, of course...
People with CFS also report reduced memory and concentration which can in turn affect working life and academic studies. School attendance can be affected by CFS in children. Headaches, generalized joint and muscle pains, feelings of dizziness, altered sensation and intolerances to noise and light are frequent complaints. There is often a perception of increased frequency of minor infections (e.g. sore throats/feeling fluey) and temperature disturbance.
Note "complaints" and "perception". Very important to emphasise that the patients merely
perceive that they suffer frequent infections and temperature disturbance...not to accept that we actually
do....
According to the National Institute for Health and Clinical Excellence (NICE), criteria symptoms should have been present for more than 4 months but should not be life-long.
Symptoms may begin gradually or at a specific point in time (e.g. following a viral illness) and vary in severity.
People who are mildly affected remain mobile and self-caring. With some difficulty, they can perform light domestic tasks and tend to remain in work and education while feeling excessively fatigued in evenings and at weekends, thus severely hampering their previous levels of leisure activities.
As well as using weekends to recover, they may require frequent days off work. Those moderately affected have reduced levels of mobility, are restricted in activities of daily living and have mostly stopped work. Feeling the need for frequent rest periods, they tend to sleep during the day and have disturbed nocturnal sleep. Towards the severe end of the spectrum, people are very limited in their ability to carry out activities of daily living for themselves, experience severe cognitive difficulties and may be wheelchair dependent for mobility. They will often feel unable to leave the house. The severely affected can be bed bound, dependent for all care, and very sensitive to light and noise.
That just about covers everybody then, doesn't it? It may start gradually or at a specific point in time, it may be mild, moderate, severe or very severe...and the bedbound often "
feel" unable to leave the house...please don't validate the feelings of these people...
What causes CFS?
There can be a profound effect on a family when one member develops CFS. Other family members can struggle to come to terms with the diagnosis and there is often a financial burden to bear. If a parent is affected that person may have to give up work. Even if children are affected, parents may have to give up work to care for them. Affected children can become socially isolated from their peers. There can be a stigma attached to CFS; even medical professionals may negatively stereotype people with CFS.
Much truth here. "Even medical professionals may negatively stereotype people with CFS". Wow, yes,
even medical professionals! Indeed, even the authors of guideline documents for GPs may negatively stereotype people with CFS...
No single causative agent for CFS has been identified. It can be triggered by viral infection in some patients, but serological evidence does not implicate any specific virus despite recent suggestions that a retrovirus is implicated. However, there do seem to be multiple predisposing, triggering and maintaining factors that contribute (Box 1).
CFS overlaps considerably with other medically unexplained conditions such as irritable bowel syndrome and fibromyalgia. One US-based casecontrol study (White et al., 2000) found that 58% of females and 80% of males with fibromyalgia meet diagnostic criteria for CFS. Familial aggregation has also been noted in CFS although it is unclear what contribution comes from hereditary as opposed to environmental factors.
Let's quote White. No mention of which definition of CFS was used in his study. No mention of diagnostic criteria here at all, in fact. No attempt to sub-categorise the condition of CFS (known "colloquially" as ME). It's all the same dustbin, of course...
"Familial aggregation has also been noted in CFS although it is unclear what contribution comes from hereditary as opposed to environmental factors."
And of couse in the absence of any research, it will remain unclear...
All this makes CFS a difficult condition to categorize. Although there is no evidence that CFS is a neurological condition, the World Health Organization (WHO) has categorized it as neurological (G93.3). However, the Royal College of General Practitioners (RCGP) classifies fatigue within its mental health curriculum statement. Some members of the NICE Guideline Development Group (GDG) felt that until further research identifies aetiology and pathogenesis, the guideline should recognize the WHO classification. Others felt that to do so did not reflect the nature of the illness. Practically, as in the management of other medically unexplained symptoms where the goal is improved function, perhaps the precise diagnostic category to which CFS is attached is unhelpful.
Silly old WHO eh? Classifying it as neurological even though there's "no evidence" that it is. Who wrote this crap, the three wise monkeys?
Box 1.
Possible predisposing, precipitating and perpetuating factors for CFS
Predisposing
Hormonal
Genetic
Stress
Lifestyle
Prolonged high achievement/high standards
Precipitating
Virus
Physical trauma
Stressful event
Surgery
Vaccination
Perpetuating
Stress
Disorganization
Poor sleep
Denial
Over-exertion
Isolation
Boom and bust
List includes plenty of factors blaming the patient - denial, disorganisation, over-exertion, boom-and-bust, lifestyle, high standards (yeah, I guess the authors of a document like this
would have a problem with high standards!). Surprisingly, though, "Vaccination" is accepted as a "Precipitating" factor!!!! OK then: lets use what they put in. These people agree that vaccination can be a precipitating factor for CFS. Their words, not mine...
But what's missing from this list? Toxins, chemical poisoning, toxic mold exposure, perhaps?...
Who gets CFS?
Although symptom prevalence of CFS is likely to have remained static over time, recent diagnostic trends have affected estimates of prevalence.
Hmm...yes, if you keep broadening the diagnostic criteria, that
will tend to affect the prevalence...
Fatigue alone is a common symptom, affecting 1020% of people in the UK. CFS, in which debilitating fatigue is accompanied by additional features, is currently estimated to affect at least 0.20.4% of the population (NICE, 2007), equating to approximately 24 people for every 1000 on a GP practice list.
Seems a reasonably accurate sentence...although hold on, earlier on, we heard simply that fatigue was the
only defining characteristic...and we heard nothing yet, still, about diagnostic criteria...what about these "additional features"?...
In adults, the most common age of onset is from early twenties to mid-forties. In children, the most common age of onset is from 13 to 15 years of age. Women are affected more than men. All ethnic groups and social levels are affected. One US-based telephone survey (Jason et al., 1999) found that ethnic minority groups and people of lower educational and occupational status were more likely to be affected.
Now this is interesting...
Note that "CFS"
now disproportionately affects "ethnic minority groups and people of lower educational and occupational status". Gone are the days when it was a "yuppie flu" disease affecting white middle class women! Now it affects mainly the opposite profile! And the evidence for this? "One US-based telephone survey". And note also that a recent UK study that found that "CF/CFS" affects about 10 times as many people as previously thought (so long as you use the loosest imaginable criteria) also emphasised these same groups.
There is a very clear agenda here to redefine "CFS" and pull in more ethnic minorities and socially disadvantaged people. This latest agenda needs watching very closely, because it is clearly a key part of the strategy going forward as to how the "CFS" label is to be used...and the implications of this are extremely disturbing...
What can be done in primary care?
Can GPs make a diagnosis of CFS?
GPs are well equipped to diagnose CFS in adults, but NICE (2007) recommends that GPs do not make the diagnosis of CFS in children but instead refer to a paediatric service (after symptoms have been present for 6 weeks). Make a diagnosis of CFS on positive grounds while at the same time excluding other possible diagnoses.
Red flag features that suggest an alternative diagnosis include:
localizing/focal neurological signs
signs and symptoms of inflammatory arthritis
connective tissue disease
cardiorespiratory disease
significant weight loss
sleep apnoea or
clinically significant lymphadenopathy
Neurological signs, weight loss, sleep apnoea, lymphadenopathy...all of them to be evidence for excluding a CFS diagnosis? OK, so is this just about redefining CFS to exclude all the characteristic signs? But remember: "ME" is the "colloquial" name for CFS...yet its defining symptoms are all "red flags" suggesting CFS diagnosis may not be appropriate...perhaps the aim is to kick the genuine "ME/CFS" out of the diagnosis while broadening the criteria to define a new group of people...while the true "ME/CFS" can remain in a "medically unexplained" limbo?...
If there are any features of these conditions, then these should be investigated and managed accordingly. In the absence of any red flag symptoms or signs, it can be difficult to know how far down the investigatory pathway to go. NICE (2007) lists appropriate screening blood tests which if negative can give confidence that an alternative medical diagnosis is unlikely (Box 2).
What attitude should GPs have?
It is important to remember that people with CFS want to be taken seriously, so show that you believe them. Doctors can make a difference to patients well being even when they cannot explain their symptoms medically. Therefore, concentrate on managing symptoms and improving function.
Hmm...yes it would be nice to be taken seriously...and this is not bad advice, on the face of it...
The doctorpatient relationship is vital in this, so ensure that you connect with patients by listening carefully to their beliefs about their symptoms. Allow patients to recap their view of the situation and share your action plan with patients, making it goal centred and aiming for functional improvement. The recent RCGP publication on medically unexplained symptoms provides useful advice in this area (RCGP/Royal College of Psychiatrists/Trailblazers/National
Mental Health Development Unit, 2011).
And yes, listening to the "beliefs about their symptoms" sounds nice too, eh? But I shudder to think what that Royal College of Psychiatrists National Mental Health Development Unit document has to say about managing the medically unexplained...but would I be surprised to learn that it emphasises the importance of
pretending to patients that you're taking their beliefs seriously? No I would not...
Box 2.
Investigations to consider in patients presenting with symptoms suggestive of CFS
Tests that should usually be done:
- Urinalysis for protein, blood and glucose
- Full blood count
- Renal function (including urea, creatinine, electrolytes and estimated glomerular filtration rate)
- Liver function
- Thyroid function
- Erythrocyte sedimentation rate or plasma viscosity
- C-reactive protein
- Random blood glucose
- Screening blood tests for gluten sensitivity
- Serum calcium
- Creatine kinase
- Serum ferritin levels (children and young people only)
An interesting list of tests that should be done there, I guess we've all had most of those and got nowhere...some of these are perhaps worth doing if we haven't had them, but more likely that's just a list of tests that can be guaranteed not to show anything, because the next list is far more interesting:
tests that GPs should avoid!!!
Tests that should be avoided:
- Head-up tilt test
- Auditory brainstem responses
- Electrodermal conductivity
Tests that should be avoided except in certain circumstances:
- Serum ferritin in adults, unless other tests suggest iron deficiency
- Tests for vitamin B12 or folate levels, unless a full blood count and mean cell volume show a macrocytosis
- Serological testing, unless there is an indicative history of an infection; if so, consider tests for:
- Chronic bacterial infections, such as borreliosis
- Chronic viral infections, such as human immunodeficiency virus (HIV) or hepatitis B or C
- Acute viral infections, such as infectious mononucleosis
- Latent infections, such as toxoplasmosis, EpsteinBarr virus or cytomegalovirus
Source: NICE (2007)
I think I understand this document well enough now to know that if they want GPs to avoid these tests, then this is a good list of tests that we want!
What information and education can GPs give?
Give early advice on symptom management, even before a diagnosis is established. Tailor this advice to the specific symptoms that the patient has, aiming to minimize the impact of these symptoms on daily life and activities. Explain to patients that there is no pharmacological treatment which is proven to cure CFS but reassure them that recovery is a realistic outcome, even though it takes time.
Take a detailed bio-psychosocial history to identify potential perpetuating factors and highlight the patients expectations and goals. Also emphasize the importance of a well-balanced diet. Do not advise patients to undertake unsupervised, or unstructured, vigorous activity, such as simply go to the gym or exercise more. Action for ME is a helpful support group that patients can be directed to. Its Website (
www.afme.org.uk) has a professional section and an
interactive online ME centre. Another useful Website to tell patients about is
www.neurosymptoms.org.
Well at least they are advising against vigorous activity! That's something, I guess. And Action for ME are recommended...well...
What disability support can GPs facilitate?
Ensure appropriate equipment and adaptations are provided for people with moderate to severe CFS by referring to local social services. Address early a patients ability to continue in work and education. When appropriate, and with the patients full consent, liaise with employers, educational providers and support services such as occupational health departments, disability services through Jobcentre Plus, schools and disability advisors at universities and colleges to support any necessary changes or allowances to enable the patient to stay in work or education. Make sure patients are receiving their full benefit entitlement. Some of these benefits are listed in Box 3. The Department for Work and Pensions (DWP) Benefits Enquiry Line (BEL) (Telephone: 0800 88 22 00 in England, Wales and Scotland) gives information on benefits for sick and disabled people, their representatives and carers, and offers help with filling out claim forms for Disability Living Allowance and Attendance Allowance. If there is any uncertainty advise the patient to contact the Citizens Advice Bureau.
Well thanks for referring us to social services and doing everything possible to keep us in work and education...hmm...I think that may be helpful...
Box 3.
Benefits which people with CFS could potentially claim (depending on circumstances)
If there are care needs or mobility problems:
Disability living allowance (age under 65 years) or Attendance Allowance (aged 65 years or over)
If unable to work:
Statutory Sick Pay or Employment and Support Allowance
If currently in employment:
Working Tax Credit
If a family member cares for the patient:
Carers Allowance
Other potential benefits:
Housing Benefit and Council Tax Benefit
Benefits because there are children in the family
Cheaper public transport and parking concessions
Practical help with care from the local council
Now that could be a useful list...there is always some good to be found in any document I guess...
What can GPs do for symptom management?
Where appropriate give advice about sleep management. Explain the role and effect disordered sleep can have in CFS and give advice on sleep hygiene. This includes:
Establishing fixed times for going to bed and waking up (and avoiding sleeping in after a poor nights sleep)
Trying to relax before going to bed
Maintaining a comfortable sleeping environment (not too hot, cold, noisy or bright)
Avoiding daytime napping
Avoiding caffeine, nicotine and alcohol within 6 hours of going to bed
Avoiding exercise within 4 hours of bedtime (although exercise earlier in the day is beneficial)
Avoiding eating a heavy meal late at night.
It is helpful also to avoid watching or checking the clock throughout the night and to only use the bedroom for sleep.
Although no medication is recommended, a small dose of a tricyclic antidepressant (such as amitriptyline 1020 mg at about 78 p.m.) may help with sleep disturbance and also pain.
Rest periods are an integral part of managing CFS. Advise patients to limit rest periods to 30 minutes at a time to avoid prolonged bed rest and introduce low level physical and cognitive activities which they enjoy. Relaxation techniques appropriate to people with CFS should be offered to manage pain, sleep problems and co-morbid stress and anxiety.
Adaptive pacing therapy (APT) is an energy management strategy in which patients are encouraged to achieve an appropriate balance between activity and rest. Pacing includes taking short, frequent rests, trying not to push through the fatigue and avoiding the boom and bust cycle (dont do too little on a bad day or too much on a good day). Many patients with CFS have reported benefit from APT.
A pain management approach for those with chronic widespread pain includes reassurance that becoming gradually more active is helpful rather than harmful, recommendation of relaxation and distraction techniques, use of physical methods where possible and avoidance of over-medication. Advise nauseous patients to eat little but often and to snack on dry starchy foods and sip fluids.
The general sleep advice seems to beg the question really; all good advice but surely we're doing all this already and still struggling? Trying to aim for fixed sleeping/waking times seems like a complete dead loss and a depressingly unachievable goal to me...but then I've only been at this for 16 years now...
It's nice to see the APT advice in there, though...that's good to see in spite of the PACE Trial's shenanigans...
When should GPs refer to secondary care?
NICE (2007) recommends that any decision to refer adults to a specialist CFS service should be based on the patients individual needs, the type, duration, complexity and severity of their symptoms and the presence of co-morbidities. The decision should be made jointly by the patient and health care professional. NICE states that referral to specialist CFS care should be considered within 6 months of presentation for people with mild CFS, within 34 months of presentation for people with moderate CFS symptoms and immediately for people with severe CFS symptoms. Refer all children to a paediatric service after symptoms have been present for 6 weeks.
Currently, there is insufficient evidence to justify the use of any immunological agents, anti-virals, corticosteroids, nutritional supplements (e.g. magnesium sulphate) or complementary and alternative therapies such as homeopathy in the treatment of CFS.
Another list of treatments with "insufficient evidence"...and thus, another good list of treatments well worth looking into...
Cognitive behavioural therapy (CBT) and graded exercise therapy (GET) have the strongest evidence for beneficial effect in CFS. Randomized control trials (RCTs) have shown statistically significant improvements in patient outcomes with CBT compared to either relaxation therapy (Deal et al., 1997, 2001) or a support group approach (Prins et al., 2001). RCT evidence has also shown statistically significant improvement in symptoms with GET compared to relaxation therapy (Fulcher and White, 1997) or standardized medical care (Powell et al., 2001). However, all these studies were limited by their small sample sizes. While NICE (2007) recommends the use of CBT and GET, some patients have suggested that CBT and GET may be harmful, many of these patients favouring APT. However, a recent well-conducted randomized trial concluded that CBT and GET can be used safely and that CBT and GET are more effective treatments than APT or specialist medical care (SMC) (White et al., 2011).
Here we go...yes...of course they have the "strongest evidence" base because for the last 25 years they have been the exclusive focus of research and that research has been twisted and manipulated shamelessly...and everything else has been ignored...and of course the "beneficial effect" of CBT and GET is minimal at best...and the fact that "some" patients have "suggested" that they may be harmful is still not insignificant...
How can GPs help with setbacks?
Setbacks and relapses are common in CFS and may be triggered by unexpected or unplanned activities, poor sleep, infection or excessive stress. Encourage patients, if possible, to maintain activity and exercise levels during such setbacks. It is doubtful whether such patients will benefit from further specialist input.
Fantastic. Well: that's some of the best advice yet. If you have a setback or relapse, due to infection or excessive stress, then you will be encourage to carry on with whatever activity and exercise you were able to do before...that is really amazing advice that. And yes, it is indeed doubtful that patients will ever benefit from specialist input...so don't waste any more money on them when their suffering worsens, please...
Conclusions
While in the past people with CFS have often had a poor outcome and reported dissatisfaction with the quality of medical care that they receive, things seem to be improving.
What??!!!
Things seem to be improving, eh?
There's evidence that we are less dissatisfied with the quality of medical care? Really?
In a survey of people with CFS in 2008, respondents reported that 40% of GPs were supportive and a further 23% were very supportive. Evidence-based treatments are now leading to sustainable improvements in patients outcomes, for adults and children, and GPs are well positioned to give helpful advice for managing fatigue early in the illness.
Well, OK, I would say that my GP is supportive.
He has absolutely no idea what to do, and he feels very bad about it, and he's profoundly ignorant about the condition (thanks to documents like this one), but he's a good chap, and he's very supportive. So what...is the improvement that GPs are less damaging in their behaviour than previously? I guess that may be true...
Key points
CFS is a condition that can significantly impair function
GPs are well placed to make a diagnosis of CFS and advise on early management strategies
No therapeutic agent has been shown to have convincing benefit in CFS
CBT and GET are beneficial
Key responses:
* Yes it certainly can: well spotted!
* No they most certainly are not - are you kidding me?
* Do some bloody research on the things that work then, and stop debunking them.
* Liar liar pants on fire.
The authors of the article above are listed as:Dr Jeremy C Gibson, Department of Rehabilitation Medicine, Royal Derby Hospital, Derby
Ms Bozena Smith, Chronic Fatigue Syndrome Services, Royal Derby Hospital
Professor Christopher D Ward, Department of Rehabilitation Medicine, Royal Derby Hospital, Derby, and Rehabilitation Research and Education Group, University of Nottingham.
Very interesting!
So it
is the three wise monkeys!
And they're just down the road...might have to pay these chaps a visit one of these days...
