I’m currently writing a resource with Action for M.E. for pharmacy teams, but as it’s M.E. awareness week and International Awareness Day today, here’s a post aimed at pharmacy teams with an introduction to M.E./CFS, a quick list of what community pharmacies can do to help their patients with M.E., and some resources for health professionals, such as the pharmaceutical management guidelines, at the end.
If you find this information helpful, please consider making a small donation to Action for M.E., the charity I work with as Volunteer Pharmacist & Research Officer, via my JustGiving page to help raise awareness, support people with the illness, and fund biomedical research.
What is M.E./CFS?
Myalgic encephalomyelitis (M.E. or Chronic Fatigue Syndrome) is defined by the WHO as a neurological illness. A report by the US Institute of Medicine, Beyond M.E./CFS: redefining an illness , states that “M.E./CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients”. M.E. affects approximately 250,000 men, women and children in the UK, and NICE estimates 40 patients per GP surgery. Introduction to M.E.
A survey by the national charity Action for M.E. found that less than a third of people with the illness said their GP was well or very well informed about M.E. GPs themselves have also identified the challenges they face with regards to M.E. Specialist NHS coverage for M.E. is patchy, with several areas not served at all, particularly in Scotland, Wales and Northern Ireland.
Having had M.E. myself for 25 years and a severe relapse just as I qualified as a pharmacist, I’m keen to make sure pharmacy teams are aware of how they can help to address the health inequalities faced by this patient group. More about my work with Action for M.E. as Volunteer Pharmacist & Research Officer .
One thing I hear from people with M.E. repeatedly is that they’re worried about disclosing their M.E/CFS diagnosis and asking for help from their pharmacy in case they’re not believed about how seriously it affects them when they appear to be fine. Why not download a poster or leaflet to display in your pharmacy so people with M.E. feel they can ask for your help? There’s a link towards the end of the article.
It might be difficult to identify patients with M.E., with it being a hidden illness and pharmacy access to medical records not including diagnoses. There’s no specific treatment to look out for on their prescription, as currently there is only symptom management, but you may see chronic pain, sleep, migraine, nausea, dizziness or depression treatments, amongst others. M.E. patients often have multimorbidities, so even if they’re not taking anything for their M.E. symptoms, you may still come across them, and it’s important to know how their M.E. may affect safe and effective use of medicines and using the services you provide. As a long term, fluctuating condition, M.E. is a disability covered by the Equality Act 2010.
Things you can do to help
In my blog post Please let me know how your pharmacy helps , I asked people with M.E. what their pharmacies do for them which makes a difference. Most of these things are applicable to any patient with disabling long term health problems, but I think it helps to understand how M.E. affects somebody’s daily life, to establish a good rapport and provide the best service possible. This is just a brief introduction, but the pharmacy resource will cover these in more detail, with citations.
- Let people with M.E. explain their illness and what their individual needs are, so that you can provide them with person-centred care. We all have a different combination of the symptoms at varying severities. Most importantly, believe them, as M.E. is a misunderstood illness and it is likely that they have received disbelief, which is hurtful and invalidating.
- It might seem a simple suggestion, but people with M.E. often have mobility problems and have difficulty standing for any length of time, even if they look OK and don’t use mobility aids. Offering a seat while they wait for their prescription or consultation is such a small thing but is really helpful.
- Cognitive dysfunction (or brain fog) impairs memory and the ability to think clearly, so suggest ways of organising and remembering to take medication, and provide information on compliance aids, if it’s appropriate for the individual. People with M.E. have shared their tips for remembering to take medication in this blog post
- Cognitive dysfunction also affects the ability to communicate lucidly and remember conversations when it’s severe, so give someone with M.E. time to explain. Longer consultations may be needed. Give a written summary of medication information or health advice in concise, plain English to take away. The NHS England Accessible Information Standard (AIS) applies to patients with M.E. who have communication difficulties. I have written about the AIS for M.E. patients here and about my experience of the AIS here
- Prescription deliveries – approximately 25% of people with M.E. are severely affected and are housebound or even bedbound, so deliveries would be very helpful. People with mild or moderate M.E. may look well when you see them but M.E. symptom severity fluctuates so they can also have periods of being housebound. It would be really helpful to suggest that someone with M.E. can phone if there’s an occasion they’re not well enough to collect, particularly if they live alone.
- Look out for polypharmacy, and in particular prescribing cascades. Both patients and specialists report that people with M.E. are more susceptible to side effects, meaning that they often need to take further meds to alleviate them. One patient I have spoken to is taking 20 meds because of this, and medication is ruling this person’s life, on top of their severe M.E.
- Medicine Use Reviews – people with M.E. will appreciate the opportunity to talk about medication problems, whether their medication is for their M.E. symptoms or a comorbidity.
- New Medicines Service – with the increased susceptibility to side effects mentioned above, giving advice on what side effects to expect and how to cope with them then following up can really help with any difficulties they’re having so that they can make the most effective use of their medication and improve adherence.
- When giving lifestyle advice, bear in mind that people with M.E. have to pace themselves and can’t undergo strict exercise regimes, as they can cause deterioration of the illness to severe M.E. The person will know their own limits and is likely to be doing everything they can manage already. Info on Pacing
- Do what you can to help carers of people with M.E., such as helping to alleviate the burden of the logistics of ordering and getting meds, or offering the flu vaccination.
- Download and print a poster or leaflet to display in your pharmacy or health centre to raise awareness and show your support. People with M.E. have told me that they’re worried about saying they have M.E. and asking for the above things that will help them in case they aren’t believed because they look alright, so showing you are aware of the illness could make it easier for someone to ask for your help.
- Have a chat! People with ME are often very isolated, with moderately ill people only managing to leave the house a couple of times a week, and you may not see severely affected patients with M.E. at all.
Useful short videos to watch
M.E. good practice guide
Recommended reading for healthcare professionals
- NICE guideline CG53: Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management
- Scottish Good Practice Statement (SGPS) on M.E./CFS
- Action for M.E.’s health and care professionals section of their website
- Key points for health professionals to consider
- All about M.E.: Symptoms and Management booklet by Action for M.E.
- NICE-endorsed booklet Newly Diagnosed with M.E./CFS: Information and advice for you and your GP
- The British Association for CFS/M.E. guide written by CFS/M.E. specialists includes a section on pharmaceutical management
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