Friday, 27 March 2015

10 Things ME Patients Need NOW!

I am fully convinced that without the support of other patients online, I would have pushed on in the earliest stages of my illness to become Severe! It is with this thought in mind that I explore what ME patients now need.

My experience when first ill, was that my (sweet, but uninformed) doctor told me to take 3 short brisk walks a day!! At this stage I was getting worse quite quickly.

Luckily, online patients soon warned me to stop pushing myself so I abandoned these walks. As a result my rate of decline slowed.  However, I was - and still am - struggling to recognise how little I needed to do, in order to prevent further damage.

In my view, it is therefore vital that front line medical professionals are made aware of the very significant harm that can be done by their failure to advise "rest and recuperation" for newly ill patients.

So what do we the ME patients need right now?  This is my wish list:

  1. Regional specialist clinics: These should be led by consultant physicians who are 100% behind the biomedical approach to ME as a physical illness (and who reject the biopsychosocial approach that promotes graded exercise and cognitive behaviour therapies).
  2. Early patient referral to one of these specialist clinics: This should happen as soon as the problem is evident, so that a full array of tests can be carried out, and the seriousness of the condition fully assessed. Waiting list times must also be kept short.
  3. Pacing and resting advice should be given at the earliest opportunity, and definitely prior to official diagnosis. The precautionary approach is important.
  4. Ongoing support should be offered on the practicalities of how to implement the dramatic change of lifestyle required.
  5. Medical professionals should recognise that a "cure" is not yet available, but be happy to work with the patient to control symptoms, and to slow illness progression.
  6. Medical professionals need to formally recognise the severity of the illness, and so give patients the support they need to access benefits, and to communicate with employers.
  7. Practical home support should be readily available for those who become more severe, with recognition that travelling to the doctor may not be possible.
  8. Hospitals need to be made aware of the needs of the most severe patients so that going to hospital, is not in reality more harmful than staying at home untreated!
  9. A re-education programme for front line Health Professionals needs to be established to rid existing professionals of the notion that exercise is beneficial, and that patients simply aren't trying to get better!
  10. And finally FUNDING - Patients need to see that governments are taking this illness seriously enough to research it with a per patient expenditure commensurate with other debilitating illness.
Here in Northern Ireland, the ME patient groups have been campaigning for a Specialist Clinic. We are very concerned that the Health and Social Care Board would prefer to offer us a Nurse or Physio led Fatigue Clinic.  That is not what is needed!

The charities in N.Ireland have been united in their call for a consultant led clinic.  This is what the Newry and Mourne ME Fibromyalgia Support Group* (of which I am a Trustee) has said: 


Click on image to enlarge

On a more personal note, I would like to see medical professionals giving early guidance on how to use tools such as a Heart rate monitor, a Fitbit or even plain paper charts to help with pacing.  I think these things have helped me.

I am sure there are many more things that we need, but this list would be a good start!
Have I missed anything obvious?


*Edit:  On 7/7/15 
Newry and Mourne ME Fibromyalgia Support Group became
Hope 4 ME & Fibro Northern Ireland


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Other posts that may be of interest:


ME Awareness:
Living Death Disease?? Aug 2014

Just ME: Blog Index

Managing Illness through Pacing;

Northern Ireland Conferences and Campaigns:
#InvisibleME Symposium - Belfast March 2015
The Northern Irish Situation for ME & Fibromyalgia March 2015

12 comments:

  1. That's a good wish list. When I first became ill I didn't have the benefit of the internet and support groups. I had to wait a year before I had any sort of diagnosis and by that time I could have already caused some damage. This was compounded by the hospital consultants who told me to follow a graded exercise programme. I had no one to advise me to the contrary and so even further damage could have been caused. Most of what I've since learnt has been via books and later the internet. I think many feel abandoned, misunderstood and neglected. There is a lot that needs to be changed and I hope that your wish list will one day be a reality for all.

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    1. Yes.. abandoned, misunderstood and neglected... all adding to the stress of being so ill. We are beyond ready for a change of approach from our medical professionals.

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  2. A good list Sally. I would add "educate yourself". Not only about the illness but about support services available and financial supports.

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    1. Indeed - we all have found that to be the only way haven't we!!

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  3. Ugh, it is so stressful when doctors are giving different (or wrong) advice. I suffer from chronic pain related to a back condition and I can't believe the extreme and contradictory advice I've gotten. Thank heavens for online forums and the ability to talk to fellow sufferers and share advice!
    #MMWBH

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    1. Yes... without the internet, and other kindly patients I would be in a much worse state now!

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  4. Looks like my doctor was at least HALF right. She immediately put me on bed rest and told me I needed an aide (I refuse to have an aide). But she never told me about pacing. Not really anyway. She DID give me some websites to look at, and when I dug deeper, THEN I saw about pacing. She wants me to do as little as absolutely possible. But I want a life... at least one where I am not in bed all day. This was a great list and entry. America is even further behind than anywhere in Europe. It is SO hard to find good care and counseling.

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    1. I think the "do as little as possible" advice is good. It is a total lifestyle change, and a very difficult adjustment because so much is given up. Mind you, I'm not sure UK is ahead of USA, but hopefully change is in the air. ;)

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  5. We had an excellent occupational therapist led unit in Leeds. Don't know what happened but it's now psychiatrist led. Even when it was excellent it was a long way to travel, so I think we need to have provision at primary care level. I think large GP surgeries should have a specialist or groups of smaller surgeries. Other chronic conditions are supported at this level.

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    1. Yes that would be good too. However it would need to be set up on a regional level under the guidance of a biomedically orientated consultant. :)

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  6. Hi,

    My mom was recently diagnosed with M.E. and it's been quite a tough journey. I am interested in the idea of 'pacing' and what it entails? I've understood it's a way of tracking your energy levels, but would love to know more and whether it's had any positive effect!

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    1. Apologies I didn't see this post til just now. I think pacing is essential to prevent decline in the condition. I have written a bit about that - if you check the index on the blog you should find a few posts that might help. Sorry to hear your mum has ME, it is a tough journey for the whole family when one falls ill. xx

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