Which advice would you give to someone who has just been diagnosed with Chronic Fatigue Syndrome / M.E.?

See some advice from people with experience in Chronic Fatigue Syndrome / M.E. to people who have just been diagnosed with Chronic Fatigue Syndrome / M.E.


Advice for Someone Diagnosed with Chronic Fatigue Syndrome / M.E.


Receiving a diagnosis of Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (M.E.) can be overwhelming and life-altering. It's important to remember that you are not alone in this journey. While there is no known cure for CFS/M.E., there are various strategies and lifestyle changes that can help manage symptoms and improve your quality of life. Here is some advice to consider:



1. Educate Yourself


Take the time to learn about CFS/M.E. and its symptoms. Understanding the condition will empower you to make informed decisions about your health and treatment options. Consult reputable sources such as medical journals, trusted websites, and support groups to gather accurate information.



2. Find a Supportive Healthcare Team


Building a supportive healthcare team is crucial. Seek out healthcare professionals who are knowledgeable about CFS/M.E. and who will listen to your concerns. They can help you navigate treatment options, manage symptoms, and provide emotional support. Consider specialists such as immunologists, neurologists, or integrative medicine practitioners.



3. Pace Yourself


Pacing is a key strategy for managing CFS/M.E. symptoms. It involves balancing activity and rest to avoid overexertion and crashes. Listen to your body and learn to recognize your limits. Gradually increase activity levels, but be mindful not to push yourself too hard. Remember, it's okay to say no and prioritize self-care.



4. Establish a Routine


Creating a daily routine can provide structure and stability, which is beneficial for managing CFS/M.E. symptoms. Establish regular sleep patterns, meal times, and rest periods. Breaking tasks into smaller, manageable chunks can help conserve energy and prevent exhaustion.



5. Prioritize Restful Sleep


Sleep is essential for your overall well-being. Establish a relaxing bedtime routine and create a sleep-friendly environment. Avoid stimulating activities before bed, limit exposure to screens, and ensure your bedroom is quiet and comfortable. If sleep disturbances persist, consult your healthcare provider for guidance.



6. Manage Stress


Stress can exacerbate CFS/M.E. symptoms, so it's important to find effective ways to manage it. Explore stress reduction techniques such as deep breathing exercises, meditation, gentle yoga, or mindfulness. Engaging in activities you enjoy, such as listening to music, reading, or spending time in nature, can also help alleviate stress.



7. Maintain a Balanced Diet


Eating a balanced and nutritious diet is crucial for supporting your overall health. Focus on consuming whole foods, including fruits, vegetables, lean proteins, and healthy fats. Stay hydrated and consider consulting a registered dietitian who can provide personalized dietary recommendations.



8. Seek Emotional Support


Living with CFS/M.E. can be emotionally challenging. Reach out to friends, family, or support groups who can provide understanding and empathy. Consider joining online communities or local support groups where you can connect with others facing similar challenges. Therapists or counselors can also offer valuable guidance in managing the emotional impact of the condition.



9. Explore Alternative Therapies


Many individuals with CFS/M.E. find relief through complementary and alternative therapies. These may include acupuncture, massage, gentle exercise programs like tai chi or qigong, or cognitive behavioral therapy (CBT). Discuss these options with your healthcare provider to determine what may be suitable for you.



10. Be Patient and Kind to Yourself


Living with CFS/M.E. can be frustrating and unpredictable. Remember to be patient and kind to yourself. Celebrate small victories and acknowledge that managing this condition is a continuous process. Practice self-compassion and allow yourself to rest and recover when needed.



While this advice can be helpful, it's important to consult with your healthcare team to develop an individualized approach to managing your CFS/M.E. symptoms. Remember, you are not defined by your diagnosis, and with time, support, and self-care, you can lead a fulfilling life.


by Diseasemaps

Pace, Pace and Pace some more

12/20/19 by ME International

Try to stay positive and think about what you can do, instead of what you can't. Listen to your body and don't push it, but don't give up either. Your body is not the same as it was, so you just have to learn what works and what doesn't. Find other people with the condition. Remember some people get better, and most people have episodes of better health. Keep up-to-date with research.

2/21/17 by Catherine 1002

Relax. Join online forums and learn about your health options.

5/4/17 by Ben 1079

When I got diagnosed CFS wasn't considered a real thing, everyone just figured in was being lazy & acting crazy. I lost my husband & every other person I loved except my kid. My best advice is to find something that explains CFS in simple terms & that shows its legitimacy & show it to the people in your life so they have an understanding of what you are dealing with & that it is actually a real disease.

5/13/17 by missylob 1056

Accept your limits. Don't do what is too much for you, seek help, rest.

8/27/17 by Emy 2050

Find a support group - on line or irl. Talking to people who understand will help. Read the Spoon Theory, and work out how many spoons you have in your life. Talk to your doctor about your symptoms and ask about medication to alleviate them. Gabapentin for neuropathy, Baclofen or Amitryptaline for muscle spasms, pain killers, duloxetine and opioids if the pain is severe. (I'm not a doctor, they are some of the drugs I've been on) Rest before you are tired, ignore bad advice from well meaning people, pace yourself.

9/5/17 by Shirley 2050

Get in touch with Open Medicine Foundation, Stanford CA USA to see if there are any "educated" doctors where you live. Educate these doctors further by referring them to OMF (www.omf.ngo). If you cannot work apply early for SSDI because in USA it will take years (they try to wait for your death rather than pay a penny in benefits). If I had more energy I would start a class action law suit against SSDI because the system is so corrupt, but so is CDC, NIH & HHS, unfortunately: all the government gate keepers are out to lunch on global epidemics.

9/7/17 by 2560

Don't get bogged down with googling and researching this condition. It affects people In so many different ways. Listen to your body, don't feel guilty for resting and try to surround yourself with positive, supportive people. Tell people how the condition affects you - most people will want to understand and it will help them to cope with the changes to you.

9/8/17 by Sam 1400

Do your best to be seen by one of the top ME doctors. Many claim to treat this illness but are not helping people.

9/10/17 by Sharon 1500

Be strong u will.need to be Most gps no very little Do not let them push u with graded exercise Abd also cbt as theyre harmful Ignore the sceptics Theres a big online support out there

1/17/18 by Annette 2500

Realize that pushing yourself physically may cause long term harm. Stop before you get tired. Plan for rest every day.

1/18/18 by Tars99 1050

A newly diagnosed person should be told what is happening to them. They should be told that the situation is usually a life sentence without parole, but that the first 4 years are crucial, can make or break the situation. Therefore they should think of it as taking a vacation for 4 years, stopping literally everything. They should have no other responisbility than to let the disease have its way, to not interfere or fight it, to go with the flow and put all concerns on the backburner for awhile. To focus on rest, rest, rest. I might not have done anything very differently, as I was a mother to a one year old, and not working. However, with knowledge and good advice I might have been wiser in my behavior. I remember being very stressed over whether I was contagious or not, for a very long time. Especially to my family. It was a waste of time, it is not contagious.

3/2/18 by Beti 2700

Be patient. Ask lots of questions. Treat yourself kindly. Don’t let anyone tell you that it is “all in your head.”

8/9/18 by cathy 2500

REST do not push through rest you are not crazy, you are really very ill so rest and hydrate had I gotten this advice I would have rested and not pushed my sick body for over 10 years even after my Dx and I might not be bedbound

4/6/19 by Fadra 2550

Lie down as much as needed and rest rest rest, take your symptoms seriously, not force yourself.

8/3/19 by Jessica 1200

Take a look at the following video: https://www.facebook.com/ChemicalsAndChronicIllness/videos/482283219312338

12/12/19 by Joanna 6200

Take it easy and rest and pace. If you push to do what you normally did, you will only get worse.

12/21/19 by Pam 3550
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That does not keep a grudge for all those years lost, by visiting doctors who said that I invented a disease. Use your experience to help others.

2/24/17 by Anabel Albornoz Molinari. Translated
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Of good people around you. But people don't understand, so we see them away one at a time.

3/9/17 by Edith. Translated
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Information about your degree of fatigue, and then assimilate you and your family the disease, little by little, never give up

5/12/17 by Marisa. Translated
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search for indormacion and the go accepting

5/25/17 by Yolanda Valledor. Translated
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Not to obsess, to analyze your life and remove from it everything that you see is detrimental to herself.

9/11/17 by Eduardo Casasnovas. Translated
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At last found the diagnosis !!!! Watch your head, and don't spend more....!!!!!

9/11/17 by Haydee de bielik. Translated
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It is a worm of doubts that are born when you receive the diagnosis of EM. Also the denial, and begins to walk in search of other opinions. I would have given him an easy explanation and short of the disease for a while, given an explanatory booklet for further information and offered support for any doubt or question. Would not have said what you can get to be the EM in-phase more advanced.

10/19/17 by Heidrun Kroner. Translated

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