What would people with M.E. like to see in a resource for pharmacy professionals?

Prescriptions signMy blog post Please let me know how your pharmacy helps has generated lots of useful comments. As the next step in preparing the resource for pharmacists I’m working on with Action for M.E., I’m asking what you’d like to see in the resource as it’s important to me to have your views on it.

In those comments there are concerns that pharmacy staff may not be aware of our illness and understand things like symptoms fluctuating and how we may look well but aren’t. This has affected whether people felt comfortable in asking for help such as prescription deliveries.

It can be difficult to explain M.E. to someone we don’t know. When my symptoms aren’t too bad, I worry people won’t believe how bad it can get but then I’ll be suffering for the rest of the day after I’ve seen them. When my M.E. is bad, the very nature of the cognitive problems, or brain fog, make it hard to explain the help I need right then. Sound familiar?

There is very little information available for pharmacy professionals about M.E., so I think there’s a real need for a resource that provides evidence-based information, along with what M.E. is like for us to live with and the sort of advice and practical help we might need from a community pharmacy. M.E. isn’t currently covered in pharmacy education but one of my goals is to rectify this. We’d like to use the resource for training materials, talks and articles for pharmacists’ continued professional development.

I’m hoping you will be able to take a print version of the resource to see your pharmacist so that it will help you to talk to your pharmacy team about your M.E. Even if you don’t take any medication for managing some of your M.E. symptoms, you might have other long term conditions requiring you to take medication and find it useful for the pharmacy team to bear your M.E. in mind.

I won’t be including GET/CBT in the resource but I will have to refer to NICE Guideline CG53 because pharmacists use NICE guidelines for all sorts of conditions, amongst many other reference sources, to inform them for the clinical checking of prescriptions. I’ll also be using the recent IoM report and the new BACME guide, but only in relation to statistics, symptoms and medication.

There’ll be a brief section on health promotion for patients with M.E., as this is part of the pharmacy professional’s role. I’ll stress that encouraging exercise isn’t appropriate as we do as much as we safely can already, and that we have to use pacing as part of our illness management, as do patients with some other long term health problems.

So, other than the range of symptoms, levels of severity and medication for symptom management:

  • What would you like your pharmacy professionals to know about M.E.?
  • What sort of questions would you like them to be able to answer for you?

I’ve also asked pharmacy professionals the same question: What would pharmacy professionals like to see in a resource about M.E.?

If you’re unsure how a community pharmacist can help, a blog series I’m currently writing will give you more information about the sort of things pharmacists are educated on and what they do in their role in the primary healthcare team.

The deadline for submitting your suggestions is 26 October 2015. Although the comment sections on the blog posts will remain open after this date, from that point onwards we will be moving onto the next stage of developing the resource.

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17 thoughts on “What would people with M.E. like to see in a resource for pharmacy professionals?

  1. If pharmacists also use NICE guidelines which offers nothing except CBT/GET it may be worthwhile mentioning that even NICE Director Mark Baker, (hope that’s the correct name) admits the guidelines are not fit for purpose concerning M.E. His comments were recorded during a meeting of ‘Forward ME’
    Also perhaps mention, doctors receive no specialist training during their years at medical school so basically it’s pot luck if a GP or indeed any healthcare provider even believes the illness exists!
    Re exercise advice, many of us also use HR monitors as part of a strict pacing regime to avoid further damage, The Workwell Foundation research, CPET, could be used to explain the dangers of strenuous over activity.
    When will your booklet be read for distribution and will Northern Ireland pharmacies be included please?

    Liked by 1 person

    • Hi Joan. The NICE guidelines do offer information about symptom management with medication and the new BACME guide has much more of a focus on this. I’m reluctant to talk about CBT or GET in a resource for pharmacists, as this isn’t within our specialism. I may use CG53 as a reference but not as the only one. I intend to use more up to date information as well, as I’m sure you’re aware that this particular NICE guideline is several years old. I will be giving pharmacists the facts about M.E. as a biological illness. Thanks again for your comment Joan and for the reference information regarding the necessary avoidance of over-exertion. Kind regards, Emily.

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      • Thank you for all the hard work involved Emily! Your project will no doubt be excellent in raising awareness and dispelling the stigma and misperceptions surrounding the illness.
        Yes NICE is very much out of date but thankfully biomedical research, since 2007, has produced some dramatic findings.
        I’m glad to hear CBT/GET won’t be introduced to pharmacists as ‘evidence based ‘ treatment due to the great debates surrounding the PACE Trial.
        So many professionals, especially uneducated GPs, wrongly perceive the word ‘exercise’ as ‘a few hours in the gym’ and unfortunately this damaging advice is still being dished out to ME patients. No doubt this is the opinion of many pharmacists also.
        Good luck with everything and thank you!
        Kind regards
        Joan

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        • There’ll be a brief section on health promotion in the resource, as this is part of role of a pharmacy professional. Encouraging exercise is normally part of this but I intend to mention that we have to stay within our safe amount of activity so as not to bring on post-exertional malaise. I don’t want to spend much of the resource on this but it’s something that has occurred to me as being important to mention.

          During my pre-registration placement, before I got my diagnosis of M.E., I carried out a health promotion campaign at my pharmacy. I came across a patient with M.E. and she explained that she had to be very careful with the amount of activity she did. I told her she was the expert in what she can manage and that I would leave the topic of exercise alone. Now that I have my diagnosis and know more about M.E., in retrospect I’m glad I said what I did and I think that’s what I’d like to happen in a similar conversation as a patient. I’d be interested to know what people think about this.

          Thanks ever so much for being supportive of the project, Joan. Best wishes, Emily

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  2. I consulted my pharmacist recently re tablets to help with dizziness, and was very aware I was stood at a counter with several other people all potentially listening in to my problems. Could Pharmacists have a more private corner, with an area to sit and speak to them if needed? ME patients (& the elderly etc) often find it difficult to stand for long , and a seated pharmacist would give you their whole attention instead of being distracted by staff wanting her to sign off other people’s prescriptions. This might also have the benefit of elevating the pharmacist in the public’s eyes, as they would then see that she is able to give ‘consultations’ and advise in many instances like a doctor would. There would also be the advantage that pharmacists would get to be consulted on more potentially diverse & interesting conditions, whilst relieving GPs of many minor ailments appointments.

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    • Hi Jackie, sorry to hear you’ve been having problems. It’s definitely best to have a chat in private, away from the busy goings on in a pharmacy. As part of the standards that pharmacy premises have to comply with, they need to have a private area or a consultation room so that privacy, dignity and confidentiality of patients are maintained. Patients can ask to speak privately but pharmacy staff should really be offering the consultation room for conversations. Perhaps it’s that it doesn’t always occur to them to offer but I’ll put a reminder in the guide and I’ll also suggest that pharmacy staff offer a seat, for example while waiting too, and make them aware that people with M.E. can’t stand for long. Thanks for your suggestions, they’re very helpful. Best wishes, Emily

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  3. Many of us are sensitive to drugs. Psychologisation has diverted attention away from problems such as the above. You are therefore a very welcome addition to our world. Example, I’m being pushed to try a tricyclic for an unstable detrusor and dizziness but I know such drugs have side-effects, even in those without ME. I’m a difficult patient because of that. My pharmacist is lovely though. Brings me my drugs. I’d like to know more about drugs for osteoporosis as many of us are not very mobile and develop this. Why can’t we have three or six-monthly injections? Are these very expensive and do they have side-effects?

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    • Thanks, Ellen, I’ll see if I can cover your osteoporosis questions in my blog as they’ll take some looking into. In the meantime I’m sure your pharmacist or GP will also be able to provide some information specific to you.

      Tricyclic antidepressants are used a lot in various conditions involving neuropathic pain, such as diabetic neuropathy and fibromyalgia, as well as M.E. but not at the dose they were traditionally used as antidepressants. The low dose for pain, sleep and other symptoms has no effect as an antidepressant at all so it’s not psychologising M.E. and it’s unfortunate that this drug is still classed as an antidepressant. The very fact that we’re commonly prescribed it at the low dose means that we are being believed that we have a physical neurological condition. I’m planning to write an article on this subject because I think it can add to the stigma that we encounter but it’s not pharmacologically correct.

      I’m afraid all medication unavoidably has side effects and different people react differently to medication but the majority of people get mild side effects or none at all. People with M.E. seem to be more susceptible, so it’s a good idea to start on a much lower dose than is recommended, and build up to the therapeutic dose gradually.

      I hope that helps to answer some of your questions, Ellen and I really appreciate your ideas for articles I could write. Thanks very much for your comment. Best wishes, Emily

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      • Emily, I’m a psychologist so am very pro anti-depressants, especially for symptoms other than depression. You’re right that they should not be referred to as anti-depressants as they do more than that. It’s misleading. I seem to recall that antidepressants are amongst the drugs to avoid if you are on benzos, even a low dose. So just drinking cranberry juice for the bladder (not much use) and sipping water while I sit to ease dizziness. Equally ineffective. In my day, low dose diazepam for seizure-like episodes and dizziness was accepted. But you can’t take them for years. As you know. That’s why I don’t want to take the nortriptilene. Prof. Ashton’s advice. (She contributes to the BNF). Benzos are not right for dizziness as some neurologists said years ago. We have to find other ways to deal with this common symptom of ME. You do develop tolerance even at a low dose and you respond oddly to other medications because of the GABA issue. So frustrating.

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        • Hi Ellen. I’m unaware of other medication, such as benzodiazipines, you may be taking, and your other symptoms, conditions and history, which is why it really is best to consult your own pharmacist or GP for specific advice relating to you. All I can really do is provide general information. Benzos wouldn’t even occur to me as a suggestion for dizziness and as you’ve pointed out that as I am more recently qualified, in this time frame they have been discouraged for any indication, other than acute situations or very occasionally. I hope you are able to find ways to manage your dizziness as I know it can be so debilitating. All the best, Emily

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  4. Just to add a short note, the MEA does provide brief advice on the use of tricyclics (a class of antidepressant drugs) for pain and sleep in their Management File on Coping with the Problem of Pain. Also available from the MEA is a fact-sheet entirely devoted to the use of Amitryptyline in treating ME symptoms: http://www.meassociation.org.uk/shop/management-leaflets/amitriptyline/.

    Antidepressants and benzos can potentially be used together – it’s a combination of drugs that I am prescribed! However, as Emily says, benzodiazipines are best used very occasionally, not taken long term or on a regular basis. Additionally the sedating effects of benzodiazepines can be increased by any other drug causing sedation e.g. opioids (e.g. codeine, morphine), & tricyclics (e.g. dosulepin, imipramine, lofepramine). (Source: http://www.choiceandmedication.org/).

    Finally, when seeking general information on a health condition with which I am not familiar, I always turn first to NHS Choices, then see if there is a NICE clinical guideline that is relevant. So – there is detailed information on osteoporosis here: http://www.nhs.uk/conditions/osteoporosis/Pages/Introduction.aspx.

    And there is a menu of the relevant NICE guidance in this topic area here: http://pathways.nice.org.uk/pathways/osteoporosis#content=view-info-category%3Aview-information-for-the-public-menu. This can be useful background reading before seeking individual medical advice, or speaking to a pharmacist about your drug options.

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    • As a health care professional, I am wary of NHS Choices, especially on ME. Perhaps that’s because I’ve read 99.9% of all the literature and worked with experts. I also worked on the NICE guidelines where I identified factual errors, alerted quality control and received the response that they weren’t bothered. I thought that was very unscientific. It matters a lot. I have since had letters flagging up errors published in journals such as the Lancet. Re osteoporosis, the NHS is patchy when it comes to the infusions. NICE can recommend what it likes but that doesn’t mean your GP can or will prescribe it. I find the NOS the best source of information. The current consensus re benzos and anti-depressants is that on the whole, this should be avoided (GABA receptors and all that). You might be ok for a while but if you have symptoms, consider the combo as an explanation. Source includes Prof. Ashton, who writes on this in the BNF. In short, NICE are not as reliable as one hopes (ask the NOS what they did re osteoporosis or the APNI re the nonsense they recommended for PND). We’re lumbered with NICE. Their sections on GET and pacing can be safely ignored as propaganda and spin doctoring. The theory re GET is based on an idea for pain and assumptions about conditioning and abnormal illness behaviour if you rest. Sorry to go on. I’ll stop.

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  5. Great project, Emily!

    I’d like PWME to be told in your guide that pharmacies will deliver to your home, free of charge. I didn’t know that for years and wish I had. Great service for the housebound.

    Also that your GP will write your prescription and the pharmacy will pick it up. So useful!

    Liked by 1 person

    • Thanks, Kate. Yes the guide is for pharmacies about how to help M.E. patients so I’ll include this info for them. I’m also writing a blog series on pharmacy services for people with M.E. so that people can get the most from their pharmacy, so yes I’ll mention deliveries and repeat prescription services. Thanks again for your feedback and suggestions, best wishes, Emily

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  6. The fact that chemical sensivities are a very real source of anxiety shouldn’t be ignored. Many gps don’t take this seriously, so having a pharmacist available for reasonable advice on medications (even otc) and trying to avoid negative reactions from them would be priceless. Pain management, sleep advice, safe activity, headaches/migraine information, help for dizziness. Food or dietary advice, especially if you arent able to eat because of exhaustion. Plus being made aware that prescription delivery services are available.

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    • These are all great suggestions, Lisa, and they’re exactly the sorts of things pharmacists are trained to do, so I’ll reiterate that these areas of support will be useful to people with M.E. Knowing the side effects for individual drugs is a big part of our training, along with how to avoid, reduce or manage them, because they can really affect patients and whether or not we can stick to taking our meds. We definitely don’t see them as trivial and we do see in practice that some patients are more susceptible to them than others. I will definitely point out in the resource that patients with ME seem to be more susceptible and will hopefully be able to find some research papers on this which will help pharmacists understand the problem and what they can do to help. Thanks again for your comment Lisa, and best wishes, Emily

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