How Stockport ME Group Can Help
If you have or think you have Long Covid then you are very welcome in Stockport ME Group. We already have about 15 or so members with Long Covid and the numbers are likely to grow significantly. Long Covid members will grow as both more people realise they have Long Covid and as we do more as a charity to promote what we do and better meet the needs of the Long Covid Community in Stockport, Manchester and the surrounding areas.
We have lots of events, activities and services that are relevant and helpful to people with Long Covid. We have a monthly Zoom meeting on the 2nd Friday of the Month. This is a programmed session and we often have an external speaker and sometimes have facilitated sessions on particular topics. Usually they will be highly relevant to many people with Long Covid. We also have online drop-ins for everyone that we are trialling once a month and face to face drop ins in local Stockport parks over the summer months.
We also have an active (but not too active) Facebook group you can join, an information and advice line you can use, a quarterly(ish) newsletter and much more besides.
We also have other projects that we are working on that are highly relevant for Long Covid. We had a session on using Heart Rate Monitors for people with Post Exertional Malaise and we are working on running a project off that which will be about half for people with ME/CFS and half for people with Long Covid and PEM. We have also ran workshops and sessions specifically targeting the needs of people with Long Covid that are not getting met currently such as Operatic Breathing Workshops etc. We are preparing video resources on Long Covid that should be on YouTube mid 2024.
We are also starting to advocate for the needs of people with Long Covid and have already had some minor successes in that area but we could really do with more people with Long Covid getting involved to assist what we can do in the campaign space.
Many of us in the ME/CFS group have years of experience managing a post viral illness and have lots of experience on everything from dealing with social services, aids and adaptations, pacing and rest, the benefits system, dealing with friends and family and all sorts of other issues and are very happy to share with and get new perspectives from the Long Covid community. We also have equipment like Wheelchairs and Light boxes available to borrow.
We have also put together some posts on this website that are well worth looking at for more information and support. See in particular this post on Long Covid links.
What is Long Covid?
Long Covid is a catch all term that has become generally the preferred label for people in the Long Covid community although some people will identify themselves by different terms.
Under the NHS Long Covid is sometimes identified as someone having Covid and then either still having health issues persisting or developing health issues as a result of Covid.
There are lots of myths around Long Covid such as you need a positive covid test to be diagnosed with Long Covid, that you need to wait 12 weeks for it to be called Long Covid or that Long Covid is just the same as ME/CFS. None of them are helpful.
We do not think you should wait 12 weeks to get help and support and the good news is that support is available much sooner than that. Many support groups including ones run by the NHS welcome people much sooner. Some groups use a criteria that if you had covid one month ago and are still not well then you are welcome. The NHS is currently recommending that if you are still experiencing symptoms a month after your initial infection that you contact your GP.
You might encounter problems accessing the support you need as there is a lot of confusion and misinformation out there.
https://www.nhs.uk/conditions/coronavirus-covid-19/long-term-effects-of-coronavirus-long-covid/
As we learn more about Covid and the long term damage it can cause us we might get to a point where there are multiple different conditions all with different names but for the moment Long Covid is what we have got.
With any virus there can be some lingering symptoms or issues. It is widely thought that most people with ME/CFS originally got a virus and from that their ME/CFS developed. Some viruses such as Glandular Fever easily take a year to recover from. Long Covid is unique though both in terms of the number of people who are suffering from it and the severity and variety of symptoms.
Symptoms can include but are not limited to post exertional malaise, chest pain or tightness, breathing problems, extreme tiredness (fatigue), depression and anxiety, brain fog and orthostatic intolerance.
What Should You Do If Think You Have Long Covid?
It is really important that you talk to your GP about what is going on with you health wise. Covid can do lots of harm to your body some of it is very treatable and some of it is very serious. If you are experiencing extreme symptoms it is really important that you get them checked out as soon as possible. The NHS is currently recommending that you speak to your GP if it has been one month after your initial infection and you are still experiencing any issues as a result of Covid. The good news is that many people find in the early days over time that these symptoms lessen or disappear entirely but it is not always the case.
It may be that you have developed a health condition such as diabetes as a result of covid and the sooner that is identified the sooner you can get the treatment you need.
Dr Charles Shepard has put together a very useful resource on Long Covid with a bit of a slant towards ME/CFS. This should not be too surprising once you know he has ME/CFS himself and is the Medical Advisor to the ME Association. This is still an excellent guide and well worth looking at to make sure you are getting the right support from your GP.
Unfortunately we have found that GPs and the NHS in general do not always take these issues seriously nor follow best practice. Some members have been told things like:-
“We don’t deal with Long Covid here you need to call 119” and
“You need to wait 12 weeks before we can see you to do with anything that might be Long Covid related”
Other times important tests have not been carried out.
Covid seems to be able to directly cause or critical damage to different parts of the body and trigger or activite critical conditions that can need urgent medical care. A key part of the NHS strategy on Long Covid is to identify and treat these people before their either die or experience irreparable harm. This can lead though through bad communication to patients going to their GP’s highlighting really serious life changing symptoms, the GP ordering some tests and when they don’t show some critical damage needing urgent treatment they just say nothing, do not make a follow up appointment or just give the impression that there is nothing wrong with you.
You might be more fortunate than some of our members have been when the tests have not shown up urgent treatable conditions but you might need to be ready to put some pressure on your GP to make sure you receive the right care, advice and support.
There is no known cure for Long Covid although many people do seem to make progress towards a significant recovery, particularly in the early stages. Treating symptoms and any co-morbidities can make a massive difference to your quality of life and give you probably the best chance to get as well as you can as soon as you can.
We will create separate member posts about treating symptoms and related issues. One of the most common is fatigue and Post Exertional Malaise. This is an area where this group could be a great help as its what we experience and have experienced well before Covid was even known about. Other symptoms include dysautonomia and orthostatic intolerance, breathing problems, chest pain, migraines, sleep problems, light and sound sensitivity and many more besides.
Referral to specialist assessment and clinics
If your needs are sufficient then it is well worth looking at a specialist referral. This can be made through your GP. In Stockport there is a multidisciplinary team assessment service called Stockport Long Covid Assessment Service and there are similar teams and services in other parts of Greater Manchester. You might also want to consider asking your GP to make specialist referrals on your behalf in specific areas such as cardiology referrals for PoTS type symptoms, respiratory physiotherapist for breathing issues etc. as well.
Peer Support
Peer support is really important. You are experiencing a crazy condition that no-one on the outside of it understands or knows much about. You might well be getting symptoms it is hard to pin down or articulate. Finding what worked for some people, overcoming misinformation and sharing experiences and feelings is really important. We can offer that but you do not need to limit yourself to us. There are also some great other help out there. If you are in the Greater Manchester area then you might want to consider the NHS led Peer Support Group that Val runs. If you are in Stockport then there is a specific Stockport group that might be right for you. There are all sorts of national and international peer support and advocacy groups for Long Covid and it is well worth exploring what they have to offer you.
How should Long Covid be treated?
If you have developed or reactivated specific conditions as a result of a covid infection then fairly obviously you need to treat those conditions. With Long Covid everyone is a little bit different in terms of what impact covid has made on their health so its hard to make too many generalisations. On the whole the NHS is not too bad when pressed at addressing red flag issues ie threats to life but with other areas the feedback has been much less consistent.
There is a NICE Guideline on Long Covid and also the Dr Sheppard guide mentioned above. It is well worth making sure that best practice is being followed. Just because an issue is triggered by Long Covid does not mean that your GP cannot treat or refer it for instance some people have developed asthma as a result of covid and whilst there are some tests that should be carried out it can be treated without the need usually for long covid clinics.
Beyond separate conditions the advice coming out of the medical community is very much focussed on treating the symptoms. This article is already far too long ( it will be edited over time into something more approachable) and we will put together some separate articles on treating the symptoms and what has worked for members. What we would like to say is that many people have found significant improvement from treating their symptoms and there are some simple steps that can be very quickly and easily done.
One of the most common symptoms people experience is post exertional malaise or symptom exacerbation. This is something everyone with ME/CFS experiences but there is work to be done in having medical tests that prove this. The Workwell Foundation is doing interesting work in this area but in the mean time it is very hard for medical people to prove but it is something that most people who have it know and understand what it is. If you do have this then rest and pacing are key to managing your condition and giving you the best chance of recovery. Our co-chair Ben did some videos on Rest and Pacing for Long Covid Support and these videos are available here.
