ME/CFS Speech Issues including
Brain Fog - How to help

Do you know someone with ME/CFS with speech issues which affect their ability to take in words?

Do they have brain fog issues which restrict their ability to socialise with you or ask you for help?

Are you a friend or family member who is asking one of the following:

  • How can I have social time with the person with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and reduce the cost they pay in heightened symptoms from PEM (post exertional malaise)?
  • How can I act in a way which means this person with  ME/CFS can overcome any speech issues and ask for some of the help they need?

Or perhaps you feel rejected by a friend with ME/CFS because they have said no to a visit. 
If you suspect  the person's physical symptoms are limiting their ability to socialise, how about sending them a link to this article?
Ask them if any of the advice is relevant to them, and let them know you are willing to do your best to adapt as needed.

Speech issues such as a problem with taking in words are symptoms which are more heightened in those with severe CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis).
However, if you are sharing a house with a friend or family member with this chronic illness, even if they are at a moderate level, you will be spending time with them when they are most exhausted. Anything you can do to adapt to the demands of ME/CFS will go a long way towards helping the person to function at their best regardless of living with illness.


How to help a friend or loved one with speech issues such as taking in your words

Hi there. My name is Katherine. I used to have very severe ME/CFS. I still have it at a less severe level.

If you have a friend with ME/CFS with speech issues, try the approaches below which helped me.

I relate to the speech issues experienced by someone who has just had a stroke. These speech problems have the medical name of aphasia.

But please know that different people with this severe chronic illness have different symptoms.
You may need to follow different advice in order to help your friend or family member with their speech issues.

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In my case, for 14 years I could only speak safely when enabled to do so by the following behaviours:

How to help someone with speech issues due to ME/CFS
  • Sit at the same level as the person to whom you are speaking.
    When I was in hospital in a raised bed I discovered that it was even easier to communicate if someone was not only at the same level but below my line of sight. It was far harder to talk if someone was above me. It was painful to raise my eyes to look at someone.
  • Do not move around while you speak.
    Any noise or movement interfered with my ability to comprehend what someone was saying and could lead to aggravation of the headache and greater confusion.
  • Speak in small chunks of conversation, leaving pauses.
    If you ask a question, leave space for the answer.

    See the explanation below of how there are two different parts of the brain.
    If you know that someone is ok with understanding words but has speech issues give them plenty of time to reply.
    Because I took time to reply a carer would often repeat a question. My brain switched to coping with and understanding this new noise coming at me and this therefore blocked my ability to reply.
    If someone spoke when I was trying to formulate a reply it also aggravated the head pain which would then make it harder still to reply!
  • Adjust the volume of your voice.
    If the person with ME/CFS is sensitive to noise, be careful not to speak to loudly.

    I had many carers who were used to dealing with elderly deaf clients. They came in with their voice booming. They were being kind, but it knocked my ability to be able to say a few words to ask them for what I needed.

    Sadly, if someone spoke very quietly, I also found it hard. I found whispering irritating to my nervous system. I also needed and still need the volume to be louder than the tinnitus I experience.
    Ho hum.
    It was hard for someone to get it right.
  • Whenever possible, don’t have another source of noise at the same time.
    It felt as though the brain equipment for being able to prioritise one noise over another was faulty. The quieter the environment the more able I was to speak.
    Avoid talking over music or when another person is talking.
  • Check whether the problem understanding speech is aggravated by the chemical environment.
    If the person has loss of speech or cognitive difficulties in reaction to perfume, deodorant etc, do what you can not to use these products when you visit them.

    I almost left out this point. On reflection, it was one of the biggest issue for me. Certain products affected my brain so badly that I could not open and close my mouth to be fed, let alone speak!

    For someone else with CFS/ME, Multiple Chemical Sensitivity (MCS) may not be an issue at all.
    For others, the presence of mould may aggravate their speech issues.
  • Help the person to relax
    The harder I tried to speak, the more I got blocked in bringing out the words. (The same was true when my body got locked in a position and I tried hard to move.) The fastest way out of this for me was to relax and pretend to myself and my body that I didn't care whether it spoke or moved!

    You can do the equivalent for your friend or family member with severe ME/CFS.
    Let your friend know that you are not feeling pressured for a response. You can communicate this with your body language - for example by sitting down and looking like you are not in a rush for an answer.
    You might say a few words like "Take your time".  Make sure it's only a few!

    For some people with Chronic Fatigue Syndrome-ME or any chronic illness, the shock of illness may have pushed their central nervous system into overdrive. Symptoms of generalised anxiety disorder (GAD) may result. 
    The symptoms of GAD can lead to or aggravate any speech issues.
    A relaxing environment calms the nervous system and may help to overcome communication problems.
  • Reassure the person with problems speaking that you are willing to adapt
    Give the person with loss of speech reassurance that it's OK to tell you what would help them to take in your words.
    It may be obvious to you that you want to help, but they may have met many people along the way who take offence at being asked to adjust their way of talking. Your reassurance will mean a lot.
  • Ask a question with a yes or no answer. Not both.
    For example, "Do you want the door shut?" - the person who can't speak much can reply yes or no.
    "Do you want the door open or shut
    ?" is a more difficult question to process and can not be answered in one word.
  • Support the person with ME/CFS in pacing out activity
    Chronic Fatigue Syndrome and Myalgic Encephalomyelitis are chronic illnesses which have no cure at this time. Often the best health management approach is to pace out activity by alternating periods of rest and activity. This applies not only to physical symptoms but also to cognitive symptoms.
    P
    eriods of time which the person with ME/CFS spends understanding words or speaking need to be alternated with quiet times.
  • Choose your content more carefully than with others
    Are you the only person that your friend or family member with ME/CFS will talk to socially today?
    Or perhaps for the whole week.
    In my case, when I was bedbound, there were years when the most often I might hope for a visit from a friend or family member was every 3 weeks.
    If so, be mindful of the content of your conversation. For example, it is not appropriate to offload about the problems of your life without regard for whether the person is well enough to listen and without acknowledgment that the person with ME/CFS clearly has their own problems.

    If you were in their situation and had speech issues which limited your communication with others, what would you like to hear about? Or what would you like the chance to talk about ?
    Ask yourself these questions but don't forget to check with the person for their answers. We are all different. We also have different needs at different times.

  • Find a way to be together without talking or without talking as much.
    One friend used to visit occasionally and meditate with me.
    It was joyous to have company, and yet not experience the limitations and discomfort that came with the speech issues I had.
  • Express appreciation of the efforts the person with Myalgic Encephalomyelitis makes to communicate.
    If someone with severe ME/CFS/asks how you are, and you know that the words are an effort and listening to the reply is an effort, every now and again tell them that you appreciate the work involved.

Two different parts of the brain

In the list above of how to help someone with speech issues and taking in words, you will see the advice not to talk too much in a row and to leave pauses. The pauses give the person with aphasia or dysphasia the space to take in and understand what you have said.

In a normal working brain a person can speak and comprehend simultaneously.
For me, between a question or an amount of speech, I needed a pause to absorb what had been said.

I then needed another pause to formulate the words for an answer.

Since my relative recovery, I have learned that there are indeed two different parts of the brain – one part responsible for comprehension and another part responsible for speech.

Feel ok about making mistakes with communication with someone with ME/CFS

The question is not so much how to help someone with ME/CFS to communicate the first time.
Although it would be wonderful to do that, it may not be possible and is not so important.

It is far more important to persevere in learning skills to help someone to talk and help them with understanding words in a way that doesn't aggravate their cognitive symptoms.

Your perseverance will communicate to the person with ME/CFS that they are worth your effort.
This in turn will help to motivate them to continue to overcome the physical difficulties of illness in order to  communicate socially with you and/or communicate to ask for the help they need.

Be very patient with yourself when you make mistakes in helping someone with speech issues.
Remember that everyone else is probably making mistakes with them too.
If everyone gives up on them, they will be left isolated and without company or help. You are doing the best you can.

Thank you for helping someone with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

This ME/CFS website aims to help with healing within and beyond illness. When you help a family member or friend to communicate regardless of their speech issues, you are potentially doing both.

Communication allows the person with ME/CFS to have a bigger life even with the illness.

A restful head and the ability to ask for what they need increases their chances of having a life which gives them sufficient rest to have a chance to heal.

In addition, your compassion, friendship, love and support may well bring them emotional healing.

If you are the family member or friend of someone with severe Chronic Fatigue Syndrome, thank you so much for all you are doing.

Articles on this healing website which may be of interest

I have written a number of articles on speech issues experienced by someone with ME/CFS. They are all likely to be relevant to helping someone with understanding words. Go here for the full list.

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Disclaimer: I am not a medical practitioner. The articles on this website are not to be taken as medical advice. Please consult a medical practitioner as necessary.

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