ME Association Website Survey: Why we’re asking about healthcare plans and ME/CFS | 01 November 2018

November 1, 2018


Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

On the Homepage of our website, we are asking this month about healthcare plans which are something that is recommended in the current (2007) version of the NICE guideline on ME/CFS.

The ME Association has always been very clear about the fact that we believe many of the key recommendations in current NICE guideline are unfit for purpose – especially those regarding the use of CBT and GET for everyone with mild or moderate ME/CFS.

We have played a key role in bringing about a rewrite of the current guideline. But the review process will take time and we want to use this period to continue gathering patient evidence that might then contribute to the new content.

There are also some positive and helpful recommendations in the current guideline and we hope these will be retained and covered in more detail in the new version. This applies in particular to the section covering General Principles of Care and the preparation of a healthcare plan:

Your care plan


“The healthcare professional responsible for your care should make a care plan with you, which is looked at and kept up to date every time you see a healthcare professional about your CFS/ME.” 


“It should include the symptoms and history of your condition, plans of treatments and self-help techniques you may be using, information and support needs, plans for work or education, and contact details of the healthcare professionals caring for you.” 


“Your care should be given in ways that are suitable for you. This may mean having some tests or treatments at home or getting support and advice by telephone or email.”


NICE Guideline ME/CFS: General Principles of Care.

Unfortunately, many of these helpful recommendations are just not taking place in practice. But we believe they should be retained, and NICE should use its influence to help make them a reality for those people that would benefit.

As a stakeholder in the guideline development process, we want to play a constructive role in trying to ensure that the new guideline is fit for purpose in all areas that it covers.

Part of this process will involve the submission of important patient evidence that we have already collected – our 2015 patient evidence report on the acceptability, efficacy and safety of CBT, GET and Pacing in particular.

We are continuing this process by asking you to complete this month's website survey. We want to discover the extent to which care plans are being utilised, and whether you have tried to obtain one and been denied.

We believe healthcare plans should be offered to anyone with a serious long-term medical condition like ME/CFS and would like to present some data to NICE when the rewrite takes place.

You can locate the website survey half-way down the homepage of our website

Comments are also welcome and can be included in the section below this blog, or as part of the discussion on our Facebook page, or sent to head office via email (please title your emails ‘Healthcare Plans').

In particular, we would like to hear from people who have a care plan in place, how this came about, what it comprises, and the benefits (or not) of having one.

Thank you.

The ME Association

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Image copyright: Copyright: 123RF stock photo/Phonlawat Chaicheevinlikit

6 thoughts on “ME Association Website Survey: Why we’re asking about healthcare plans and ME/CFS | 01 November 2018”

  1. I have had to push all the way for diagnosis and care for years and have had the usual for ME misdiagnosis and bad harmful advice. I have asked for a needs assessment and care plan but was ignored. The clinic when discharged me. as they are unable to offer telephone consultation or home visits, my ME is severe (from moderate to severe) so I’m unable to visit them and i refused GET and CBT and group ‘therapy’ The clinic wrote a letter and comprehensive advice on care both to me and to my GP. Some advice eg vitamin B injections were ignored by GP (again) Advice given was ‘If relapse to reassure and ensure I was pacing etc and no need to do any further testing unless a temperature. So they wrote a sort of care plan which I don’t know if the doctor even read.

    However as I hadn’t had any contact with my GP about ME. For 9 months and as I continued to deteriorate I re-wrote my medical history (there were so many omissions and inaccuracies). Along with brief social history on the date line. I suggested follow up blood tests might be a good idea, especially as I have other long standing health conditions including heart. I wrote that like other ME patients, especially with moderate or severe ME I felt ignored and just left to get on with it.

    After 3 weeks I requested a phone consultation to discuss. GP agreed some blood tests and asked what I thought was the problem. I said it was difficult for me to know because when I was admitted to hospital in December last year I I had no idea I had pneumonia again because other chronic and acute pain and symptoms were confusing, because I continue to be in constant pain at different levels it is difficult for me to know what is going on with my body.

    Since blood tests were done I have had no further contact. This means they would be OK. I have been offered an App via a text from the surgery, through the GP Foundation to have a consultation with a GP on line. I accepted this as a very good idea although I haven’t accessed it yet. We are moving to another county next weekend so will take paperwork with me and try again for better care. A proper care plan which includes regular checks with a named GP. Or at least a district nurse. Better or any care for me as a housebound, mostly bedbound Patient.
    I rely on the Internet for information and advice and also support groups and face book sites. I use this information for my own care plan.

    1. Thank you for taking the time to reply to our website question. We will collate all comments anonymously and use them in our future work with NICE on the new guideline for ME/CFS.

  2. I’ve had ME for 15 years, but have not yet been given a diagnosis beyond my initial consultation, which was of chronic fatigue. Not even CFS.
    Not the correct diagnosis. Since then, I’ve been duly dismissed and ignored.
    I responded with don’t bother seeing the doctor, it was the closest I could find. I don’t bother, because they think there is absolutely nothing wrong with me. They’re a business; they operate by tick-box and collecting their duly-performed gold stars.
    I don’t bother, because I know they won’t help or believe me. Not because I think they might not.

  3. Having had no support from my previous GP I decided to move practices about three years ago. The new practice isn’t perfect, but they do see me and offer telephone consultations, almost always with my own GP, listen sympathetically, and have sent me for tests for other conditions (for MS, Lupus). Following the latest MEA question, I’m now going to ask for a care plan – I know that I will have to dictate most of it, but I think it will help prevent both me and my GP from giving up hope that there is anything they can do for me. (My sister is also a GP, so I do have a little sympathy with them!)

    1. Thank you for your comment. We will collate all responses and use them anonymously – along with the survey results – in our ongoing work with NICE on the new ME/CFS guideline.

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