Don't Criticize What You Don't Understand : One man's experience of the NHS Chronic Fatigue Service

A maelstrom of emotions floods my mind. Anger, disappointment, yet betrayal leaves the sharpest
tang. Hanging up, I immediately replay the conversation:

So what should all these negative blood tests tell you?”
“That the correct tests don’t exist yet?”
“Or, that you do not have a physical problem”
“We will accept you back when you are mentally ready to begin treatment.”

M.E sufferers are familiar with this attitude. It usually manifests in the more alternative treatments our desperation has led us to. A lack of yogic control over the autonomic nervous system dismissed as being not “ready to heal”, bad karma. The bottom-line is clear – we are to blame for remaining sick.

This was different – this was the NHS Chronic Fatigue Service. For three months two nurses sat in my home scattering endless pie charts and completing countless activity logs. They reassured me they believed M.E/CFS was definitely a real illness, but until a cure was available this was the most appropriate course of action.

Of course the warning signs had been there. The Hospital is an odd juxtaposition of dilapidated psychiatric ward and painfully inadequate attempts to modernise the areas patients initially encounter. Wheelchair access was poor, the fatigue service located on the first floor at least 1 km from the car park. Waiting rooms were shared with the gender reidentification and eating disorder service.

An immunologist, claiming to have a special interest in CFS/M.E. had referred me. He was very reluctant to carry out blood tests assuring me they would all be normal. Since my visit they have dispensed with this token nod to actual medicine.

Questionnaires were weighted to fatigue and mental health with NO mention of any other symptoms. The room was stark, my interrogators positioning themselves against a bright window. Aware of my limited energy, the session lasted 2.5 hours. I was punch-drunk by the end. There was much talk of proven evidence based treatment and holistic viewpoints - CBT/GET/Pacing dressed up in tactile New Age terms.

Four years later it would appear my recalcitrance has returned to haunt me. Following a four month wait for a dietician appointment my local surgery informed me that the CFS service stated that as I have “rejected their intervention” I was no longer eligible for treatment. My referral had been made to a dietician in a different Health Authority yet somehow had ended up with the CFS service – how?

People ask me why we get enraged when the media publishes blatant propaganda about our illness.

The reason of course is the pitiful money spent on research is directed at a Groundhog Day kaleidoscope of psychiatric spin. Despite the government listing M.E as a neurological illness the entire culture of treatment is saturated by psychiatry. And not even the more enlightened modern approach to mental health. M.E patients seem to endure a Victorian disdain for their suffering.


Like the Dalai Lama, the majority of patients have pursued years of passive resistance, longing for the paradigm shift a biomarker will deliver. 

Who can blame us? Many cannot lift their heads from the pillow to protest. Healthcare professionals are the gatekeepers to state benefits – we must comply. But as an old punk snarled “anger is an energy.” It is time to get angry, even if it is just challenging the small prejudices we all face on a day to day basis. The tide is turning – we and the psychiatrists can feel it – they are scared, their desperate tactics prove it; soon their gravy train of psycho babble will be smashed by the force of cold hard science. A change is going to come.

Comments

  1. From the Mayo Clinic website:

    "No tests exist to diagnose Parkinson's disease. Your doctor trained in nervous system conditions (neurologist) will diagnose Parkinson's disease based on your medical history, a review of your signs and symptoms, and a neurological and physical examination."

    And yet the ICC lists a number of tests than can confirm a diagnosis of ME. Why the extreme level of denial of scientific evidence and discrimination against patients? My best guess is it is due to the rise of the insurance industry lobby and the shift of government health agencies to prioritize budget and reputation above public health.

    If the timelines of ME and Parkinson's were switched I imaging Parkinson's patients would be the ones in our predicament.

    -Jan

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    Replies
    1. Thank you so much Jan for your astute and wise comment. We have an overwhelming battle on our hands to get the truth out; the truth must be spoken.

      Delete
    2. I was going to say the same thing Greg. I'm studying Parkinson's and there are no blood tests to confiirm a disagnosis as Jan states, one of the most effective methods of determining whether or not you have it is via the patient's response to Levodopa. There's no test for MS either, something the medical profession doesn't seem to have a problem with, not any more anyway...

      A very good, if depressing, blog post but I'm sorry you've had to endure so much.

      Delete
    3. Alex Young aka alex3619February 6, 2015 at 10:18 AM

      Thank you for this blog. Its frustrating to realize this kind of ineptitude has been going on for decades. I have taken to using ineptitude rather than stupidity or other descriptions as I think its the most defensible label.

      Its not the case we have diagnostic tests of ME, nor tests that can confirm ME. We do have tests that can demonstrate very clear and very disabling pathophysiology. Its not quite the same thing.

      Let me write some dates for when these tests were first discussed in the medical literature:

      1940 Tilt table test.
      1946 Quantitative EEG
      1949 Cardiopulmonary exercise testing.

      Three of the most important tests for establishing disabling pathophysiology date to the 1940s. Its clearly ineptitude if doctors are either unaware of the tests or are denying they are useful, given the published scientific data. We fall into a trap if we claim these are diagnostic, as we give them grounds for refuting our claim.

      Delete
    4. Thank you so much Alex, you raise an important issue. We agree it may ineptitude for some and lack of discernment, however the consistent cover up, these last 30 years, the deliberate suppression of the facts , the confusion of names and criteria, we believe is much more sinister. Regarding the tests that is very interesting indeed; there are other tests, that are generally denied to people with ME. I made a brief list on this blog :http://carersfight.blogspot.co.uk/2009/11/updated-clinical-guidelines.html

      Delete
  2. Yes! The time for change is now! Scientific evidence is mounting and the psychiatric lobby are clutching at smaller and smaller straws to hang onto their nonsensical approach.

    ReplyDelete
    Replies
    1. Well said Sally. Exactly- smaller and smaller straws are being clutched at, however it is being accompanied by louder and louder shouting, mass flooding of the media- and it is being believed. Even so, surely change must happen, truth must win.

      Delete
  3. Geoff, thank you so much. The blog post is by Malcolm, who has Severe ME, see his other post, last month : Day Release, another immensely powerful read. The gap between the treatment and respect given to those who have Parkinson's and ME, is vast, especially when it comes to the most severely affected, like my wife who has endured over two decades of unspeakable, horrendous physical suffering and acute hypersensitivity, that makes her life a nightmare, yet there is no medical support available. Worse than that, it is dangerous for her to engage with the medical profession, there is such dangerous ignorance and a dearth of information to ensure safe treatment, or even understand the risks of treatment.

    ReplyDelete
  4. I have a friend who has severe ME and Fibromyalgia. I feel completely unable to help as I do not know who can help. I have tried the various support websites, but it is not information that I need, I need to know who to approach to get her medical assistance to help deal with the pain and alleviate some of the symptoms. Am I being naïve in expecting some form of pain management for her? Her Doctor is not sympathetic, she can not get to the surgery and apparently can not get a home visit. HELP please

    ReplyDelete
    Replies
    1. I am so sorry to hear about your friend. It is very difficult to get medical support for ME, the expertise, in our opinion, is not there. That said no one should have to suffer the way people with Severe ME have to suffer. We believe strongly in fighting for each person's needs. The main issue is that there is virtually no appropriate research into Severe ME. People do find various things that might ease pain slightly, but it is very individual. On top of that there are the hypersensitivity issues to take into account. It is very complex. The person needs to make sure they have had all the relevant tests, unfortunately not so easy to access once you have been labelled "CFS". Sending you both our love, keep looking for answers - we believe they MUST be out there !

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