Countess of Mar tells House of Lords that people with ME/CFS are treated “abominably” by caring professions | Lords debate | 7 January 2015

The Countess of Mar, who chairs the Forward ME Group of ME charities, made the following contribution during a short debate on NHS: Medical Competence and Skill in the House of Lords yesterday evening (7 January 2015).

My Lords, I, too, am grateful to the noble Lord, Lord Parekh, for introducing this Question for Short Debate this evening.

I encounter almost daily cases where people with ME/CFS and others with medically unexplained physical symptoms, known as MUPS, are treated abominably by members of supposedly caring professions. For example—and it is by no means an isolated example—a young man of 17 had problems with tolerating foods since he was a small baby. Standard tests could provide no clear reason. By the time he was 16 he was diagnosed by consultant paediatricians at both St Thomas’ and Great Ormond Street hospitals as being extremely reactive to almost all foods and was restricted to a prescribed liquid diet, as none of the consultants had any other resolution. Eventually he was admitted to an environmental medicine polyclinic, where I am also treated, where he has been treated with low-dose immunotherapy and nutritional supplementation. Over a period of a few months, from being able to tolerate no foods he is now eating 33 different foods with few problems.

On his 17th birthday, he went out with some friends for a meal and during that night he developed very severe abdominal pain and, after his GP had refused to visit, his mother managed to get him to the polyclinic. There acute appendicitis was diagnosed and immediate admission to his local hospital in Oxford was recommended. The paediatric consultant’s first response was to ask, “What has the mother of this boy done now?”. On arrival at the hospital the consultant informed the mother that he knew that nothing was wrong with the boy but he would keep him for observation. He scheduled a scan and then went home for the weekend. The boy was left screaming and in acute pain for a further 24 hours, without pain relief or other medication. By the time he was operated on, his appendix had perforated, making treatment much more complex than necessary.

To this day, despite all the evidence of the extremity of his reactions to foods and the failure of our two flagship hospitals to treat this young man’s condition, his Oxford consultant insists that there is nothing wrong with him, that he should stop the polyclinic treatment and that he should eat a normal diet, apparently because standard allergy tests do not provide confirmation. This results in great stress and distress to the boy and his mother.

In fact, substantive evidence in numerous publications proves that the safety and efficacy of immunological changes after treatment with oral immunotherapy for cow’s milk allergy, nut allergy, allergic rhinitis, wheat desensitisation and other specific foods and chemicals is well recognised. The treatments are validated and are neither experimental nor complementary medicine.

I have long wondered why there should be such particularly unreasonable treatment for people with MUPS and I have come to several conclusions. Medicine is supposed to be a very rewarding profession, whether the practitioner is a doctor, nurse or ancillary worker. The patient consults, the doctor diagnoses and prescribes and the patient gets better or at least no worse. On the occasions when the patient’s condition deteriorates and he or she dies, it is usually because the illness is well understood and this is part of a normal process. This is clearly not the case with MUPS. Modern doctors are highly reliant on technology. Test reports taken at face value can dominate the diagnostic process without taking into account factors such as clinical presentation and history and the possibility of false positive or negative results. Additionally, medical practice has become a cost-benefit calculation, with treatments either enforced or rejected on this basis rather than on patient need. I have the distinct impression that, because some doctors and other medical practitioners fail to understand some disease processes, they grow impatient, even intolerant, when their patient fails to respond and then they blame the patient.

The skills that medical practitioners acquire during training are essential to good practice for the rest of their working lives. Unfortunately, the natural scientific curiosity of the profession seems to be stifled in the course of their training. There are still far too many medical professionals who hold that MUPS are “all in the mind” and that patients simply need to pull themselves together, perhaps with the help of a little cognitive behavioural therapy. Somehow, current research findings are not filtering down to doctors who deal with patients.

Are the time constraints on appointments and the dependence on technology reducing a doctor’s ability to listen and to communicate effectively? Is it because GPs and consultants work such long hours that they have neither the time nor the energy to do their own research on problems concerning chronically ill patients? Is it because complex investigations cost money and initial investigations come back as being within normal ranges that the current view is that further tests would not be cost effective? Or is it because doctors have become so demoralised that they can see no reason to go the extra mile on behalf of their patients?

The NHS is excellent for acute management of illness because clear guidelines are usually followed assiduously by all staff. Chronic complex conditions are problematic because clinicians seem to deal with only one symptom at a time. Specialisation means that patients with ME/CFS are rarely looked at holistically. I have heard of one doctor’s surgery with a notice on the door which reads, “One complaint at a time”. The trouble is that frequently it is the combination of symptoms which will point to a clear diagnosis.

I have confined my speech to one aspect of competence and skill, one which falls far short of the excellence that should be the norm. I am interested to hear how the Minister proposes to improve the position for some 250,000 patients with ME/CFS and the many more who have other medically unexplained symptoms.


The debate was answered by the Parliamentary Under Secretary of State for Health, Earl Howe, and the full text can be read HERE.


7 thoughts on “Countess of Mar tells House of Lords that people with ME/CFS are treated “abominably” by caring professions | Lords debate | 7 January 2015”

  1. Did I miss it? Earl Howe said precisely nothing in response specific to ME/CFS. Just a vague reference to specialists vs generalists in the medical workforce, and a reference to new training in the curricula for “care of young people with long-term conditions.”

  2. Glad it wasn’t just me who couldn’t find anything in Earl Howe’s response.

    Seems it’s not only health professionals who treat us ‘abominably’

    Annx

  3. At the very least the condition is being discussed in the House of Lords. I agree with the observations of the countess of Mar. On receiving the diagnosis of ME from the local specialist my GP firstly seemed unwilling to engage and then stopped a pain medication and suggested i reduce medications for depression since it is obviously a physical condition. No suggestion of a reduction regime was offered and i was given a topical cream for a rash on my face which the GP had noticed during the consult.
    It is my humble opinion that considering a GPs salary that it would be perhaps be viable to employ a research assistant to carry out the background work involved in specialist cases. Therefore improving the service to the patient and reducing their work load.
    Apologies if this causes any localised rioting in any surgery waiting rooms.
    Regards
    Dave

  4. This is very good that this was discussed and I feel very blessed to have the Countess of Mar fighting our corner.
    But, ME is not part of the category of Medically Unexplained Physical Symptoms.
    I realise that the NHS treats it as such.
    But MUPS only applies to a condition where there is NO EVIDWNCE of physical abnormalities.
    We know from research this is far from the case with ME.
    The abnormalities in individual ME patients could be identified in everyday NHS Clinical medicine IF the patient was referred for the right tests.
    Doing the most basic of blood tests alone and then claiming that symptoms are medically unexplained is scientifically unsound.

    The fact is the NICE guidelines discourage further tests (based on the psychosomatic theory that this will only encourage the patient to ‘believe’ that they were really physically I’ll or increase ‘health anxiety’).

    But this basically means people with the ‘CFS’ label are being denied a proper thorough assessment to determine it their symptoms are medically explainable (using tests currently available in clinical medicine) or not.

    The fact is, you cannot tell someone their symptoms are medically unexplained unless you have done every single possible available test targeted at that symptom.

    Yet the NHS does this every day to ME and CFS patients, resulting in either people being misdiagnosed with ‘CFS/ME’ who actually have a different condition, or people who do actually have ME being fobbed off on the basis that their symptoms are ‘unexplained’.

    This is wilful injustice by the system at its worst.

    Done for the purposes of saving money – never mind how many hundreds of thousands of lives stolen away, lost, ruined, diminished, to incapacitating disability or death.
    And how much unimagunable suffering is endured in the process when consultants won’t treat severe symptoms or offer ‘therapies’ that cause deterioration,

    1. My opinion is that you are absolutely right ‘fizzyapples’. I have just attended a neurology appointment with a neuropathic illness. It was never mentioned by him! Instead I was told I did not have a neurological disease and that was a good thing. No symptoms were discussed and when I said I have ME his response was to say, ‘they call it Chronic Fatigue and it is considered a psychiatric, psychological condition’. He disputed the WHO classification and when I told him NICE had removed it from the Mental Health section, he said, ‘well they were pressured into that, so I think we will have to agree to disagree’.

      I agreed and left. I felt extremely upset and down that night, but having heard this story so many times before, I know that the ignorance which prevails amongst both health professionals and the public in general is worth overcoming my own upset and disgust to push on with awareness campaigns in order to make positive changes.

      What we need is to unite and fight against ‘MEism’!!. It is as bad as racism and ageism and twice as nasty considering what ME throws at sufferers from all sides.

      We need more Lady Mar’s and people to support her and us.

      Annx

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