As I am now also a ‘Long Hauler’, my family and I have been keeping our eyes peeled for any M.E appropriate research studies for me to participate in that may help my recovery. My Mum spotted an ad for the study highlighted in this blog post on Facebook and shared the information with me.
Inspiration for the future: A randomised control trial using inspiratory muscle training in post-COVID-19 rehabilitation.
I was genuinely interested in participating in this study. On the surface, it did not seem too energy-intensive, and I believed participating may have been within my ‘mild’ M.E limitations. I emailed the lead researcher Dr. Melitta McNarry and asked for more information. I disclosed that I had M.E on my initial email and asked if my having M.E would be an issue for their research study (ie. skew their results). Dr McNarry responded with – ‘I don’t see your ME being a concern from our perspective as long as you are happy with the study protocols’.
I can’t supply the information sheet as it was shared with me via Google Docs and I can’t seem to attach it to this blog (even as a pdf)!
This is the section that concerns me the most.
……..you will then be asked to do a Step Test which involves stepping onto and off one step in time with a beat that gets faster every two minutes. At the end of each two minutes, we will ask you to take your heart rate and this will tell us whether you do another two minutes or stop there. This test is entirely led by you, we will stop whenever you feel like you don’t want to keep going or when you reach 80% of your peak heart rate, calculated as 220 – your age. We will be on Zoom for all of these measures to help you and to encourage you to keep going for as long as you can. If you become unwell during any of these, we will direct you to contact your GP or dial 111 immediately, depending on the severity of the situation.
I emailed Dr McNarry with my concerns
Sent: 25 September 2020 19:04
To: Mcnarry M.
Subject: Re: Covid19 respiratory study
Thanks for sending me the information so promptly.
I was genuinely interested in participating however, after reading the information sheet, I have concerns and will not be participating.
Full disclosure, as well as being a Long Hauler, I am also a long-standing M.E/C.F.S advocate and Managing Director of an M.E/C.F.S online training company.
Are you aware that one of the subset groups of Long Covid patients are developing M.E/C.F.S? This week, the ME Association’s Dr. Charles Shepherd has written this document – https://meassociation.org.uk/wp-content/uploads/Post-Covid-Fatigue-Syndrome-and-MECFS-September-2020.pdf
My concerns are that Post-Exertion Malaise is the key defining characteristic of M.E/C.F.S. The level of activity mentioned in your information sheet would cause a serious exacerbation of symptoms in Post-Covid M.E/C.F.S patients. This exacerbation during the early stages of having M.E/C.F.S (within the first year) puts patients at risk of a severe worsening of symptoms and the possibility of being house or bed bound for a long period of time -months or even years.
Are you are asking participants if they experience a symptom flare after even minimal exertion before allowing them to participate? Anecdotally, I know many Long Covid’s who find they cannot get out of bed for a few days after exerting themselves with a gentle walk or light housework.
Are you aware that many Long Covid patients are also experiencing Postural Orthostatic Tachycardia Syndrome (PoTS) ? PoTS can also be a symptom of M.E/C.F.S. This is another issue that ought to be considered before allowing participation in the study.
I look forward to hearing from you.
I am not aware of the study screening procedures so didn’t want to jump to conclusions as to their knowledge of M.E and Post-Exertion Malaise but felt I needed to raise my concerns.
Yesterday, 29th September 2020, I received this response:
Thank you for your email and for the points you raise within it. One of my colleagues does a lot of research in C.F.S. so I am aware of it from discussions with her.
I would certainly agree that we would need to be extremely careful and, in circumstances such as this, we would seek approval from the participant’s own doctor prior to further enrolment in the study to ensure that no one is put at increased risk.
I wish you all the very best in the future.
I am grateful for the reply but still have concerns and I will write about them below.
Anecdotally, as with M.E, we know that some Long Haulers have been disbelieved by their GP and/or told it’s ‘just anxiety’. My own (M.E aware and sympathetic) GPs have also said that ‘it’s a new disease that we don’t yet know enough about’. How will GPs know whether the patient would feel no negative side effects during and after taking part in this trial? This is a lot of responsibility to put on to GPs.
It is known that some Long Covid patients are experiencing an exacerbation of symptoms after minimal exertion. Post-Exertion Malaise is the key defining characteristic of M.E. Even if these patients do not go on to develop M.E or an M.E-like illness, they should not risk permanent exacerbation of symptoms by exercising and increasing their heart rate. I believe that this study will cause the heart rate to increase too significantly for these patients.
This week, articles have been published to highlight heart issues that are being experienced by Long Covid patients. This article warns against exercise if patients have ongoing heart issues. The problem that is many patients, myself included, have unexplained breathlessness. This breathlessness could be caused by the lungs, heart, or a faulty Autonomic Nervous System (that can be an M.E symptom) where the body ‘forgets’ how to breathe. Many Long Covid patients, myself included, have only just started to have investigations into ongoing breathlessness, so it is still unclear whether heart issues are related to our breathlessness. Our GPs won’t know this either.
I know Long Covid’s are desperate for answers and are willing to participate in any research study that will lead to progress (in exactly the same way as M.E patients are). However, with this particular study, I would encourage patients to think very carefully about the risks involved and urge them not to assume that their GP will know how the research study will impact their ongoing Long Covid symptoms.
Very obviously, I would not recommend that any Long Covid patients who have been told by their GP that they are likely to develop ‘Post-Covid M.E/C.F.S’ participate in this study.
and Foggy OBVIOUSLY xxxx
*Foggy* Have you seen?!! I have set up a 2 week ‘Birthday Fundraiser’ for my P.A. I want to raise £250 for Cure ME for biomedical research into M.E. Please donate if you can!! Oh and…my wristbands are on sale!! Take a look!!
Buy your wristband here – https://www.mefoggydog.org/product/foggy-sees-m-e-wrist-bands/
Thank you and Foggy snogs xx