From Public Service Review: Central Government, Issue No 21, 6 January 2011 (article by Rhona Johnston, professor of psychology, University of Hull).
University of Hull Professor of Psychology Rhona Johnston argues against the widespread belief that ME/chronic fatigue is a psychological condition…
ME/chronic fatigue syndrome (ME/CFS) is a chronic state of profound exhaustion, often accompanied by pain, sleep problems and cognitive dysfunction, and it is made worse by exercise. In my local health authority area, individuals with a long-term fatigue problem used to be sent to the immunology department at the regional hospital for diagnosis and treatment, but now they are referred to a psychiatrist. This is a growing trend throughout the UK. These days, getting a diagnosis of chronic fatigue is tantamount to getting a psychiatric diagnosis. This is good for creating work for psychiatrists, but is it good for the individuals concerned? If their condition is a physical illness, they will not receive suitable treatment and so will not make a full recovery.
The psychiatric view of what they term ‘chronic fatigue syndrome' (the term ‘fatigue' clearly trivialises the severity of this illness) has gained considerable ground in the UK in recent years, aided by the supposed lack of evidence of physical causes of the condition. What evidence can psychiatrists adduce to support their assertion that ME/CFS is a purely psychological illness, that is, a form of hypochondria?
Psychiatrists argue that individuals with medically unexplained symptoms have ‘functional somatic syndromes' – that is, although their symptoms appear to be physical, they are psychological in origin. It has been argued, on the basis of an analysis of the literature, that having the belief that ME/CFS is a physical illness leads to a poorer prognosis, and that these faulty attributions perpetuate the illness. Thus the fact that these individuals believe that they have a physical illness is seen as a further manifestation of their psychological problems. However, if those who assert that they have a physical illness do indeed have one, the prognosis for recovery without suitable treatment is clearly going to be poor.
One of the main treatments on offer for the condition is cognitive behavioural therapy (CBT), which has been shown to lead to a significant reduction in fatigue symptoms. This finding might be taken as support for the idea that ME/CFS has a psychological cause. However, there is a higher incidence of depression in those with chronic physical illnesses than in the general population, although in the case of ME/CFS this has been found to be no higher than in, for example, rheumatoid arthritis. Thus CBT may, for a subset of individuals, ameliorate some of the tiredness resulting from a concomitant depression, while not addressing the underlying fatiguing disorder. It is unclear, however, if this is indeed the case, as the authors of these studies use ME/CFS classification criteria that take fatigue as the main symptom. The exclusion of physical symptoms allows the inclusion of individuals who do primarily have a psychiatric disorder. Thus the statistical reduction in fatigue found with CBT may be largely due to the fact that individuals suffering purely from depression are included in these studies. It should also be noted that there is a lack of evidence of long-term benefits of CBT for individuals with an ME/CFS diagnosis.
The higher proportion of women suffering from ME/CFS is also thought to be evidence that the illness is psychosomatic. It is unclear why this should indicate a psychological illness; after all, women are more prone to gallstones as well. It is noteworthy that when a doctor made a study of viral illnesses in his patients over a 40 year period, of those who subsequently experienced central nervous system pathology, 67.8% were women (of whom a third also experienced ME/CFS) and 32.2% were men (of whom a third also had ME/CFS). Thus there was a clear physical basis for the disproportionate number of females suffering from ME/CFS in this study.
It has also been asserted that ME/CFS is a psychiatric illness because patients have often experienced abuse in childhood. However, stressors like abuse are known to cause physical ailments. For example, it has been found that child abuse is associated with an increased incidence of ischemic heart disease. It has also been shown that individuals having severe chronic stressors in the 12 months prior to being deliberately exposed to a virus were significantly more likely to become ill than those with acute stressors or a low number of stressful life events.
A mitochondrial problem?
It is clear that there is little evidence in favour of a psychological explanation of ME/CFS. We therefore need to consider the biomedical evidence for a physical disorder, of which there is a considerable amount. To aid simplicity, the approach taken here is to consider the possibility that individuals with ME/CFS may in the majority of cases have a similar physical problem, but that it may have diverse causes. A recent study has found that 70 out of 71 individuals suffering from chronic fatigue had abnormally low mitochondrial function. Mitochondria are organelles within cells and are the main producers of cellular energy. Mitochondria have to have an intact inner membrane to produce energy via a process called the electron transport chain. There is evidence that a wide range of chemicals impair mitochondrial function, including pesticides, herbicides, PCBs, solvents, toxic metals (such as dental amalgam), plastics, and fluoride. Impairments can also be caused by drugs such as antibiotics, non-steroidal anti-inflammatories and anti-parasite drugs.
There are also infections that cause mitochondrial problems, such as mycoplasma. This is a micro-organism that lacks a cell nucleus and a cell wall; it damages the inner membrane of mitochondria, depleting the nutrients in the cells, disrupting the electron transport chain, and causing chromosomal aberrations in the host cell. Studies by Dr Garth Nicolson have shown that individuals with ME/CFS have many bacterial and viral infections; however, a high percentage of them have mycoplasma infections. Thus, over a number of studies, Nicolson and his group have found that between 51% and 68.9% of individuals with a chronic fatigue diagnosis have a mycoplasma infection. Most of these studies were carried out in the United States, but the higher figure comes from a Belgian study, in which only 5.6% of controls showed signs of the infection. Nicolson's group has also shown that using a supplement that restores the mitochondrial membrane leads to both a reduction in fatigue and an increase in mitochondrial function in individuals with chronic fatigue. Clearly, the infection scenario is a complicated one; susceptibility to mycoplasma and other infections may arise from having an immune system weakened by viruses, and viruses themselves might damage mitochondria. However, getting rid of a mycoplasma infection in those affected will be very beneficial for energy levels, and so reduce stress on the body.
Chronic exposure to stress can in itself damage mitochondria and also impair the functioning of the adrenal glands. Adrenal insufficiency could be a primary cause of ME/CFS in some individuals, as the symptoms are similar to those of Addison's disease. Less extreme debilitating adrenal problems also occur. It has been shown that overworking the stress system leads to problems in keeping a balance between the functioning of the hypothalamic-pituitary-adrenal (HPA) axis and the immune system. If there is an immune challenge, this produces inflammation, and the actions of the HPA axis reduce it by damping down the inflammation. However, if the body has to do this often it becomes overstressed and cannot maintain the balance – this is likely to happen if the body is dealing with a long-term infection like mycoplasma.
Treatment
What can the NHS do to help individuals with ME/CFS? At the moment, many individuals are offered expensive but harmless CBT. This technique is now widely used for so many illnesses, including cancer, that it can even be purchased online. They are also offered potentially damaging graded exercise regimes. Exercise can be very beneficial, but not if misinformed practitioners believe their patients to be depressed and persuade them to exercise beyond their reserves of cellular energy. Pacing is excellent and can cost nothing – here, individuals make sure that they keep their activity level within their energy envelope, and so avoid bouts of disabling exhaustion.
In order to help at least some people recover, it would seem a good use of resources for the NHS to screen ME/CFS patients for low mitochondrial function, adrenal problems (not just testing cortisol levels at midday) and mycoplasma infections. The latter can be treated by antibiotics, which if administered early on could mean that these individuals would avoid having to suffer this debilitating disease for decades, with the consequent weakening of their adrenal glands. Removing this infection is unlikely to lead to an immediate cure for long-term sufferers because of collateral damage to other bodily systems, but there must be a chance that a proportion of individuals will regain their health and lead happier and more productive lives.
Not a bad article, but it does have some major faults.
Chronic fatigue is a symptom not the disease, which some call Chronic fatigue syndrome, and should be still, and by many, is called M.E.
CBT is not counselling and is not harmless. CBT is based on the person not having a disease, but irrational beliefs, thoughts and feelings about their symptoms. The evidence base for its use is very flawed and not proven at all. Studies which are looking at the symptom chronic fatigue are not looking at ME/CFS. In those severly sick, CBT can cause relapse due to have to exercise your brain, and denying your true symptoms to satisfy the irrational beliefs of CBT practioners that your symptoms are not caused and maintained by a physical disease.
Child abuse has not been linked to ME/CFS. A study from the CDC looking at the symptom of chronic fatigue is again not about the disease ME/CFS. This random dialing (kind of like a game show) selection of patients is uttley flawed and a waste of money.
So CBT doesn’t work, ME/CFS is not linked to child abuse, but yes depression can occur at rates similar to other serious physical diseases, and conselling can help some who want it.
Of course it doesn’t help that it was scientists at Hull University who said that chronic fatigue could be alleviated by eating chocolate!
It was actually researchers at Hull York Medical School who did that work.
But why doesn’t it help?
Please read what they actually said before making glib statements.
The Hull study looked at ten people, no controls. Used Fukuda without PEM.
It doesn’t help because it trivialises ME by suggesting that it can be helped by eating chocolate. Are you an ME sufferer? If so, do you think it is helpful that stories like this are reduced to soundbites by the media?
Good to see a well balanced argument about why ME is not a psychiatric condition. I see it is from a public services review but don’t know what implications that might have.
I think I shall take one major line from this article and use it again:
What evidence can psychiatrists adduce to support their assertion that ME/CFS is a purely psychological illness, that is, a form of hypochondria?
They have no evidence. No testable hypothesis.
I agree Christine. A very useful quote or banner!
I thought that this was a good article, but unfortunately, it is probably far too intelligently written for the mainstream UK media to run with.
A lack of detailed knowledge on the part of the majority of journalists that write about ME is a huge problem. Hence the details get glossed over and our illness is frequently misrepresented.
David Tuller – the New York Times Columnist and lecturer in medical journalism at the University of California, Berkley, gave a very interesting talk on the subject of medical journalism to Vincent Racaniello on TWIV 119.
http://www.virology.ws/
I welcomed the article for the reasons that I think are obvious.
I have a few niggles but nothing serious.
I have done CBT several times and found it a help when suffering severe depression at times of major relapse and removal from society.
On those occassions CBT and counselling were never ‘sold’ as a curative for my CFS.
The mitochondria stuff and cause was interesting – some of the ‘curatives’ I have been misled into were actually potent prescribed drugs allegedly treating parasite infection and ‘yeast’ infection.
I was suggered into those things I suppose. Paid for it big time.
The anti-inflammatories and mitochondria was interesting – they too seem to be prescribed for ‘our’ pain in some instances.
Of most interest though – is that none of this proves anything. It is another opinion.
I would welcome more standardised testing for better targeted treatment – but prove causation first please.
Not another wild goose chase.
I love that this article is published. It is such good timing for me, as I’m trying to get my doctor to prescribed pulsed antibiotics, having done a great deal of research on it.
Firestormm, there’s CBT and CBT. JT was referring to the White/Chalder/Wessely version, but it sounds like you got the regular kind. Which is good.
Objective diagnostic tests to aid diagnosis are
VO2 max tests at +1, +24 and +48 hours after exercise
Abnormal spect scans
Test for a TH17 biased immune system
Natural killer cells – low in patients
Rnase-L – high in patients
Sed rate – usually very low
Deficiencies in Mitochondrial function evidenced by abnormally low ATP production and raised anti cardiolipin antibodies
Positive tilt table tests
Positive Romberg test.
Crimson crescents in throat
XMRV test
Viral assays including EBV, HHV6
Multiple swollen mobile, painless lymph nodes
Assays for other common co-infections such as HHV6 and EBV, which can be targeted with medication.
Vitamin B12 and D tests – if levels are low they can be supplemented.
All these have been known about for years, but the somatic causation hypothesis has pushed them off the centre stage, and none are allowed under the NICE guidelines, in case we are encouraged to believe we are ill.
Jace.
I noticed you include as objective testing XMRV and Crimson Crescents. The rest I can’t comment on, but other things are surely reported symptoms, or observations, and not tests.
How currently is XMRV an objective test?
They shouldn’t call it CBT if it is counselling.
No I agree and my post wasn’t directed at you JT. My counselling was one-to-one that involved CBT.
Previous sessions over the years have been more CBT than counselling.
The Mindfulness I am currently trialling for the NHS is Mindfulness-Based Cognitive Therapy for Stress Reduction.
In my experience it hasn’t affected my underlying illness adversely, and was not intended to ‘treat’ said illness.
Except when it is the PACE trial, and we know they are telling the patients it is not for incorrect beliefs, thoughts and feelings, when it is. The same poeople involved in the PACE trial tend to control all the ‘fatigue’, not ME/CFS, clinics. So were they telling you the truth?
Should I care JT?
Am not sure how much I as a patient and sufferer should be reasonably expected to do.
Yes you should care that you are being deceived. How can people be able to give informed consent to studies that are manipulating evidence to trick patients into participating? Are you experiencing the placebo response to these treatments because they are misleading people as to their evidence base, which for CBT and GET is non existent?
When they tell you to go for a walk, do you care enough to know that if you have ME/CFS that will increase symptoms? Do you get compensation when this happens so that you don’t starve to death homeless, because the damage done is so severe?
What can you do? Complain and say no more. Demand proper rigorous research, and not this manipulative trash. It’s not just your life at risk from these fools. Vunerable people don’t know they are about to give up their future to satisfy the false “beliefs” of the Wessely school.
JT – totally agree with your comments.
This is a very interesting article – deserving of a much wider press coverage, although like other posters I very much doubt it will ever see the light of day in the daily newspapers.
I have attended the Kings College CFS treatment & research unit for CBT a la White/Chalder/Wessely model as it is their baby. Having completed the 12 standard sessions – the 3/6/12 monthly follow up sessions it has made no discernible positive impact on my ME – my symptoms haven’t lessened – neither has my activity levels etc.
I am familiar with the underlying principles of CBT & with the concept – practice of breaking down activities to a base level & building up as akin to skills acquisition having used them in my former careers eg sports & counselling. I also have depression, the cause of which is non ME related according to my excellent GP.
The only thing I would say, is that I did find the CBT therapist to be helpful in just being able to meet – chat with someone with whom I didn’t have to keep explaining what is like to have ME. However, I will be recorded in their statistics & research publications as being someone who by maintaining my illness is a physical disease, has not fully engaged with the & and therefore has been in denial of the White/Chalder/Wessely school of the prevailing & all pervasive view ‘that ME/CFS is a psycho/social phenomena – all in the mind’. Therefore my inability to accept the irrationality of my continual & stubborn belief that my illness is physical in its origin has meant I have perpetuated my illness.
This in itself wouldn’t matter so much if it wasn’t interpreted by the Govt, NICE, DWP, insurance companies & occupational pension providers et al as being a failure by the patient/client to engage & nothing at all to do with the fact CBT cannot & does not cure ME/CFS. The pre eminence of the White/Chalder/Wessely school view gives them all a very good reason not to fund any other kind!
Even membership of an organistion like MEA is officially classed as contributing to a negative outcome!
Surely whether the cause of the symptoms is psychological or physical depends on the patient – symptoms attributed to ME are so varied and so many – it can’t be possible to explain all of them in all people with ME in the same way. Having believed all the time I had ‘ME’ that it was physical – reinforced by ME magazines and accepted by doctors and consultants, though never properly diagnosed – now, many years later I think it was psychological – and I think I rested far too much for far too long and it has had a very detrimental effect on my brain function, motivation etc etc. Ruined my life. because I was so afraid that if I did too much, something terrible would happen to me – actually doing so little has resulted in something terrible happening to me.
To me the most important issue raised is RE the “good use of resources for the NHS [would be] to screen ME/CFS patients for low mitochondrial function, adrenal problems (not just testing cortisol levels at midday) and mycoplasma infections.”
This, surely, should be a major objective!
I have paid for private tests to determine my mitochondrial functioning, most of which came back showing deficiencies indicative of mito dysfunction. Why does the NHS not do this? I took the results to my GP, who, understandably, admitted the tests were beyond her ken, and had no idea if I could be referred to a relevant specialist.
Why won’t the NHS recognise mito dysfunctional at least a possible explanation for ME? It seems relatively rather well documented.
(BTW, I did get CBT on the NHS for ME. It had absolutely no effect.)