If you have newly been diagnosed with ME/CFS and are not sure what to do next then you have come to the right place. Particularly if you are in Stockport, Manchester or the surrounding areas. Sometimes slightly different names are used such as Systematic Exertion Intolerance Disorder, Chronic Fatigue Syndrome, myalgic encephalomyelitis or Post Viral Fatigue. They are all pretty much diagnostically identical although some people might suggest they all mean very different things. You can join our Facebook group and reach out to our 200 or so members there. You can drop us a message on the “Contact Us” page, you can turn up to one of our face to face or online events. Or you can just read and watch the information and advice on this website. We also recommend this Action for ME Guide for newly diagnosed people as well as The Fatigue Book by Lydia Rolley.
If you have not been diagnosed then you are still very welcome here. There are lots of problems with getting an ME/CFS diagnosis and we have members who have never been formally diagnosed. We do advise that if you have not been diagnosed you consider discussing matters with your GP because there are many conditions that can share similar symptoms with ME/CFS but are often more treatable. That, however is entirely your choice.
Basic Advice
There is no known accepted cure for ME/CFS but many people do make significant improvements over time. This is particularly helped if they get plenty of high quality rest and learn to pace effectively. Unfortunately despite lots of evidence to the contrary many so called experts as still recommending exercise to treat ME/CFS. Not only is there no evidence that this helps it can trigger a major relapse or aggravation of symptoms. Some of our members went from more or less getting by to being stuck at home, barely able to leave their beds just from doing exercise when their bodies said no but their consultants said yes.
Rest
Rest gets a bad reputation. It is full of associations with laziness. Many people in and out of the NHS will warn about deconditioning but the reality is if you have ME/CFS the best thing you can do to help yourself is make sure you get enough rest. It does not need to be for long periods but it often needs to be of a high enough quality. That can vary from person to person what will qualify as adequate resting. For some of us it needs to be lying down in a dark room with little noise or stimulation. No phone or tablet in sight, no TV and no thinking too hard or deeply about anything. Not talking to people either. Often to get into adequate rest, particularly early on in the illness support can be needed. Relaxation tapes or guided meditations can help create the calm needed for quality rest to take place afterwards.
Rest is not the same as sleep. For some with ME/CFS sleeping during the day ends up not being refreshing the way rest can and there can also be problems with bad sleep hygiene.
Pacing
When people first have ME/CFS they are often in what is called a Boom/Bust cycle. One minute or day they seem to have energy and then many more minutes or days they have none. Sometimes they have loads of symptoms and other times they seem not too bad. Pacing is about trying to break out of the boom/bust cycle and stay within your energy levels. Part of pacing is doing what you can to avoid doing anything that causes you over exertion where possible and staying within your energy limits but there is much more to it than that.
We believe that few people, except some of the least affected and some that are just amazing are able to learn to effectively pace on their own. We recommend accessing specialist help such as from Stockport NHS ME/CFS service to assist you in learning how to pace. Unfortunately not everyone is able to access a service where they live on the NHS and if that is the case we recommend both that you try to access an out of area service or consider private options. There is http://www.cfsselfhelp.org/ which has low cost courses and support for people wanting to learn to pace as well as more advanced courses that others might wish to consider. The written information on the website is of a high and accurate quality but we do not have any feedback of anyone doing these courses as yet.
We also highly recommend https://www.actionforme.org.uk/uploads/pdfs/Pacing-for-people-with-me-booklet-Feb-2020.pdf as whilst it does miss out some advanced pacing concepts it is the best way we have found for people to learn pacing on their own. We are doing what we can to help people access the expert help they need on the NHS so if you are having difficulty doing this feel free to reach out to us and we will help if we can.
Our co-chair Ben ran a series of sessions on pacing for Long Covid Support and the video recording of these sessions is available here. They are broken down into manageable 30 minute chunks and you can pause the video where ever you need.
Stockport ME Group have also been involved in research into how Heart Rate Monitoring can assist with pacing. Results of that research are still to be published but it does confirm and support our co-chairs view that ” everyone who needs to pace should seriously consider using Heart Rate Monitoring”. Ben has put together a guide here and is working on more accessible resources in this area.
We believe that the best way to learn to pace is with skilled support from an experienced practitioner. This could be in a group setting or with one to one support. This is available in Stockport from Stockport ME/CFS service through the NHS but not everyone can access a service such as this on the NHS. It is really difficult to learn to pace well on your own because of brain fog, because of personal biases and just because pacing is really, really hard. If you are in Greater Manchester or East Cheshire and struggling to access pacing support do get in touch with us and we will see what we can do to help you access existing services in Greater Manchester.
Peer Support
It is very hard for people who do not have ME/CFS to understand all the challenges and difficulties that come with ME/CFS. It is a condition that very little is known or understood about by the medical profession and there is lots to be learned from spending time with others with the condition. It can also be really empowering to find that you sharing your own experiences can really make a difference to other peoples lives. In Stockport ME Group all our committee and volunteers either have ME/CFS themselves or have cared for someone who does. All our activities are about bringing people with ME/CFS together. Joining our Facebook group, coming to our sessions, joining and receiving our newsletter are all great ways to tap into essential peer support.
Identify and Treat Co-morbidities
There are lots of co-morbidities that people can have with ME/CFS. Whilst ME/CFS has no known cure many of the conditions you could have in addition to ME/CFS. Addressing these other conditions could take less pressure on your body. It could give you more energy to do what you want to do or even just give you the best chance of recovery possible.
Some of these conditions you might have had before ME/CFS, some might have come about directly or indirectly as a result of the ME/CFS. Whilst ME/CFS is very much not a mental health condition coping with ME/CFS can cause mental health issues and these are often more treatable with therapy or medication than ME/CFS is.
Some of the most common co-morbidities include fibromyalgia and PoTS. Others though still happen quite often including Multiple Chemical Sensitivity, IBS and thyroid problems.
Check the diagnosis
Unfortunately many doctors and hospital specialists do not know much about ME/CFS and have a lot of prejudices and misconceptions about the condition. It is a difficult condition to accurately diagnose and the diagnosis is really a diagnosis of elimination ie. you have a set of symptoms they cannot attribute to something else. We have often heard of doctors not having carried out some basic tests before making a diagnosis. We have had some members discover they had a very different condition causing the symptoms that led to the ME/CFS diagnosis sometimes years earlier.
If you have been given a diagnosis of ME/CFS or think that you have it then it is still worthwhile carrying on with best practice for ME/CFS but still worth exploring alternative and additional diagnosis’s at the same time.
We recommend looking or having your medical advisor look at the ME Association recommendations for diagnosis and also here.
Treat Symptoms and Reduce the Load
There are a wide range of symptoms that people can have with ME/CFS. These include post exertional malaise, brain fog, pain, nausea, unrestful sleep, orthostatic intolerance and many others. Not all of these are treatable but some of them are and dealing with the symptoms can make a massive difference to your overall well-being as well as reducing the load on your body and giving you the best chance of making a recovery.
As well as treating the symptoms you are experiencing you can look at what you can do to be kind to yourself and take some pressures off. We are all in very different situations and circumstances but it can include having a meeting with your employer so that some reasonable adjustments can be made to the work you do. It might be you are carrying some excess weight and if you are able to lose some of it you might be able to do slightly more. It might be you need to re-adjust your life goals so that they are more appropriate for someone with diminished energy and health. The kids might need to do a fairer share of jobs about the house. The less you are having to deal with the more energy you will have for doing what you want and need to do and the better the chances are of you making an improvement.
As the website expands we will have much more information and personal experiences from our members to share on how you can treat your ME/CFS symptoms. For the time being keep looking at the blog as new articles will appear each month. See also the treating symptoms section of this great article https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8161074/#medicina-57-00510-box006 and see also this guide from the ME Association.
Stockport ME Group
If you are new to ME/CFS then you are also going to be new to our group. We have an active Facebook group, monthly Zoom meetings every second Friday of the Month as well as face to face meet ups, an advice line, a newsletter and a range of other activities too. Check out About Us to know more.