Communication , an extract from our forthcoming book : How to Care for Someone with Severe ME

Communication and Severe ME


Communication is likely be difficult, if not impossible  for the person  with Severe ME , depending upon  the range, complexity and severity of their symptoms. Cognitive issues, in conjunction with noise sensitivity, complicate communication even further . 


It might help to break the way you think about communication down to incoming and outgoing communication; the difficulty is how to  communicate in the best possible way, at the right possible time : some times might be easier  than others . 


To begin , you need to know what symptoms might be affecting  communication  :


  • Energy levels?
  • Ability to speak ?
  • Noise sensitivity ?
  • Functional ability ?
  • Visual disturbance ?
  • Photosensitivity ?
  • Pain levels ?
  • Headache ?

Questions you might ask yourself are :


  • Is it okay to speak to this person at all, or do I have to use some other form of communication - writing a message, visual hand signals ?
  • Have they left me a message to tell me what needs doing so that they do not have to speak to me ?
  • Will the person be able to make sense of what I am saying ?
  • Do I have to slow my speech down ?
  • Do I have to simplify my language ?
  • Do I have to avoid wordiness or description ?
  • Can the person cope with being asked a direct question ?
  • How am I going to get the information I need ?
  • Is it okay to touch the person when communicating or are they in too much pain and too hypersensitive ?
  • How close can the person bear me to be if I have to whisper; how near by can I be without disturbing them ?

When receiving communication from the person , these are some things you might need to consider:


  • Do I understand what the person is trying to say ?
  • Are there particular speech difficulties I need to be aware of such as mixing up words, slurring words, low volume of voice , whispering so quietly you cannot hear the person clearly ?
  • Is cognitive dysfunction a problem for the person ?
  • Will cognitive dysfunction make it difficult for the person to articulate what they want to say to me ?
  • Can they speak at all ?
  • Is accessing memory difficult for the person ?
  • How bad is their brain fog ?
  • Are some times of day easier for the person to communicate ?
  • Are some times of day impossible for direct speech ?
  • Do I need to listen more attentively than I normally would ?
  • Will the person have enough energy or memory to repeat a sentence if I have not heard correctly or not been paying enough attention ?
  • Will I make the person more ill interacting with them ?

Issues relating to Communication


For the person who has Severe ME , the issues relating to communication are intricate and complex . Two-way communication may be much harder than one - way communication. Depending on which parts of the brain are affected it may be easier to do certain forms of communication than others.


Anything requiring the need to deal with incoming information and then outwards communication may be too complex for a person  with Severe ME, such as answering a phone , typing an email , holding a pen or forming letters on a page. It may be even harder if the person is asked for abstract information or exposed to voice tones and loudness they cannot tolerate.


There can  be multiple difficult communication issues impacting , with varying degrees of intensity, upon the lives of people with Severe ME. 


The carer might need to take messages for the person or speak on their behalf. This may be more difficult at certain times such as when/if paralyzed, close to waking up , if the person is very sleepy. These are only examples. Each person varies. 


The carer may need to write things down for the person, write a letter. You may be required to answer the door or speak for the person even at times. Only do such things with permission and try to be as clear as possible with the person what you have done for them.


 Always respect their communication difficulties and work with the person .


The physical world, no matter how physically near a person with ME may appear to it , may still be totally out of reach to them;  this may not always be obvious to the carer especially if they see a person able to manage something in one particular moment - not realising that the possibility of doing it again may be months away  .


Do not assume anything : 


Just because the person's eyes are closed, do not assume they are asleep. They may not be able to open them.

Just because the person is not moving, do not assume they are resting. They may not be able to move.

Just because the person is lying down , do not assume that equates with resting. They may be in great physical distress.

Just because a person sleeps ,do not assume they will feel rested  or better afterwards.

Just because a person has got  dressed , do not assume that this means they are feeling well or more able; they do not equate.

Just because the person can speak to you, do not assume they can listen to or reply.

Just because a person can speak, do not assume they can answer questions or describe or communicate their needs; they may be severely  cognitively affected.

Just because a person can manage something, with great difficulty, in one moment, do not assume they will be able to do it again in another or repeat the activity or action. They will have post exertional malaise/ fatigue /auto-immune dysfunction.

Just because the person can tolerate your energy or your voice , do not assume that means they can tolerate anyone's energy or anyones voice. Everyone has a different impact.

Just because the person is in the same rom as you,  do not assume that they experience the environment in the same way as you do. The environment will be hostile to varying degrees because of the nature of their hypersensitivity.

Just because you know someone else with ME, do not assume this person with Severe ME will be the same.

Just because you have read about  about ME ,  do not  assume that you will automatically get it right with a person with severe ME; everyone has their own complex set of symptoms impacting uniquely on their lives.

Just because you want to help the person, do not assume that this moment will be the right moment to achieve this.

Remember this :  it is highly unlikely that you can  imagine just how  much the person with Severe ME  is suffering .


Always listen  and accept what you are told .



It is important to try and understand the many potential blocks to communication , this does not necessarily mean you will be totally successful.

(Greg Crowhurst (2011) from the forthcoming book : How to Care for Someone with Severe ME)

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