THE CARER TIMES

Why symptom management is not enough

Aask a patient group to describe what they want from an ME Service ? Typically you might hear talk of a " biomedical" consultant and " symptom management" ; it seems, sometimes, that people cannot see much beyond a cobbled bolt-on approach to the current fatigue clinics. Our forward thinking needs to be much more aware than that.

Symptom management in ME tends to be about : Sleep, Pain and Fatigue.

• Control the pain ????
• Control the sleep ????
• Pace yourself ????

For my wife, at least ,pain control is not possible especially using current drug regimes – she is really drug sensitive. Linda does not just want symptom control ; most of her ME symptoms are ignored or not understood because the causes of the symptoms are not found using standard NHS tests. There are not even proper aids and equipment that will ease her symptoms such as noise and light sensitivity.

In short, there is nothing being done to address the illness, all the time you suggest that a therapy-led service and questionable symptom management charades as an ME service.

The risk of people with ME being made more ill needs to be understood.

Linda’s paralysis is completely negated by standard neurology consultation – it is simply unacceptable not to investigate.

The NHS does not pay for supplements as they do not seem to accept they are valid medicine because they can be bought over the counter and not available on prescription.

New tests, not currently available on the NHS need to be available using world-class Labs, that have expertise in tests realting to ME.

A biomedical Consultant without a biomedical pathway and new tests and treatments agreed in principle, still does not make a biomedical service.

Existing Fatigue Clinics

By all means have a local Fatigue Clinic, but keep it separate from an ME Clinic. If some people want to do pacing, go to the Fatigue Clinic, but do not say that is an ME Service.

A Fatigue and an ME service need to be kept separate, otherwise one charades as the other.

Use of mental energy is as dangerous as use of physical energy for people with post-exertional malaise. CBT is potentially as dangerous as Graded Exercise, especially for the Severely Affected. Some people might want it, to help them cope, but the way CBT is used in the UK is not as a coping mechanism, but as a strategy to deny your illness.

If you offer CBT at a fatigue Clinic, that is fine. If you offer CBT as a treatment for ME, it is fundamentally wrong.

New Service, new tests, new treatments.

A fundamentally new service with new provision needs commissioning and agreeing. Biomedical pathways need to be set up to ensure that tests and treatments and practitioners new to NHS, can be brought in and that the tests can be safely interpreted by people who believe and know ME is is a multi dysfunction neurological disease. Treatments resulting from interpreted tests need to be paid for by the NHS.

It is so much more than symptom management that is required - the disease process and dysfunction in the body needs to be identified if possible or at least attempted.

People with ME need adequate medical reports stating their dysfunction and an honest prognosis, rather than pretence that they will get better for no reason with no appropriate biomedical interventions.

A very important point is that treatment and support need to be ongoing with no financial pressure to kick people off the books if they don’t get better and no expectation that the interventions will cure , but that people’s suffering needs easing and that new answers need seeking !

Components of an ME Service :

• A biomedical ME aware Consultant.
• Commitment to new biomedical tests and treatments. Both ones currently available on the NHS, that are not offered to people with ME, such as PECT scans, T3, but also new tests , for example mitochondrial functioning, LYME disease, Pesticide tests, Gut tests, from new labs, such as Acumen, who are world leaders in this field, and access to the expertise of the Breakspear Clinic, who are leading the way in looking at health and ME and new biomechanical interventions, such as the Perrin Technique. There is expertise that the NHS can draw upon, if only they are open to it and it is this openness, to the new that is required; to look at the physical, underlying process of the physical dysfunction, not just mask it by pretending to offer management of symptoms, while focusing only upon three, one of which is not specifically relevant to ME – and pretending that is an ME service.
• Clinic facilities that are appropriate . To ensure the environment is an ME –friendly as possible, by providing quiet areas, room for people to lie down, flexibility of treatment times, awareness of Multiple Chemical Sensitivity.
• For the Very Severely Affected, there must be a home-based service, with Consultant visits.
• Training and education for all NHS staff. Staff need to be educated in the risks and dangers of working with anyone with ME. The NHS must accommodate the complexity of working with these patients to ensure safety.
• Accountability for clinicians and staff who continue to ignore, negate , deny, downgrade, not meet, through ignorance, the biomedical needs and the WHO definition of ME as a serious neurological disease.
• New aids and Equipments developed, offered, to patients with ME, that reflect the very real environmental assault that these patients experience. For example, provision of suitable ear protection against noise, seating and bedding that will provide the necessary levels of comfort for someone in acute, constant pain, who can never get physically comfortable. Help with Light Sensitivity. Looking at the neurological symptoms, advice on MCS and how to deal with it within the household. A knowledge base of what is safe and recommended for people with ME. Dietary and nutritional advice for very complex gastric and food sensitivities and allergies. Automatic referral to specialist physios regarding wheelchairs. Training of specialist OT’s
• Home dental service for the very severely affected. Travel is an issue, chemicals are an issue, mercury is an issue- non-mercury fillings are not available on the NHS, but should be as a health issue in severe ME. Anaesthetics – need to be non-adrenalin. There is currently a gap between dentistry and medicine that people with ME fall into – there needs to much better direct communication .
• Home optician service .
• Wider Health needs that go unmet because of the inability to access health services as they are. A willingness for other Consultants to visit people with Severe ME at home. A total relook at how to meet the needs of the housebound, without putting their health at risk by having to go and see Consultants who do not understand the issues – and countless missed appointments. Yet the health needs remain an issue.
• For the Very Severely Affected there needs to be direct access between GP’s, Consultant’s and Patients, to discuss health issues as they arise, quickly. The whole procedure for communication needs looking at.
• Personal Budgets are an excellent way forward. There has to be a commitment from the NHS to rethink its views on Nutritional Medicine for ME, which are actually treatments not just supplements. People with ME are depleted of various essential vitamins and minerals, etc. These are treatments the NHS should be providing, because they are essential to health, different than the ordinary public taking supplements as a dietary addition.
• Link to current Research and the ability to adjust to new evidence and new findings.
• A specific medical pathway for ME, so that patients do not have to be referred to an Individual Funding Panel

What the norm should be for people with ME :

Some ideas in no particular order :

• Every GP, Nurse, Consultant, Practitioner should know that Myalgic Encephalomyelitis is a serious WHO disease, with multi-system dysfunction and that any intervention has the potential to make the person more ill.
• Drug sensitivity is a real issue.
• Very Severely affected patients will require home visits.
• The way you approach someone with ME can either maximise or minimise the effectiveness of the appointment.
• Everyone needs to know that perfumes make the person with ME more ill and should not be worn, when seeing someone with ME.
• The loudness of your voice can exacerbate noise sensitivity.
• Questions and information can be too complex for someone with cognitive dysfunction to understand and process.
• Even examining someone with ME can be dangerous- staff need to understand this.
• You might need to speak more slowly.
• You need to be flexible, set longer appointments, because of the physical issues and communication difficulties.
• Even if someone appears to be able to do something in one moment, their overall reality may be more complex. There will always be a post-exertional impact with ME. The severely affected particularly, will have a massive negative response to any intervention or contact.
• It’s important to respect the way people communicate.
• An understanding of how hard it is for a person with ME to be in a normal environment, in a normal interaction.
• The person should have access to all services without worrying that their health will be harmed, through ignorance, negation and denial.
• All of their health needs will be taken into account in any hospital situation they find themselves in, whether Out or In-patient .
• Your health should not be put at risk because people do not understand your illness or accept your level of physical dysfunction.
• The motto of a new service should be safety and respect.
• The biopsychosocial approach needs to be completely eliminated for this to happen.
• You have got to stop using the "CFS" label for ME.
• The Consultant’s clinical biomedical judgement should always be respected, in regard to new biomedical treatment recommendations.