Visiting Research Fellow, Oxford University. Studying Long Covid.
Ambassador for charity
@long_covid
"Anti-Recovery Activist" Phil Parker May 2024
BBC piece:
I spoke to
@BBCSport
recently about my experience with Long Covid. I feel very grateful to be able to tell my story - so many people are suffering without a voice or the support they need. Progress is happening but *so* much more needs to be done.
#LongCovid
@oonagh_cousins
was left wondering what might have been after being forced to prematurely end her rowing career.
She spoke to
@BBCSport
about her story 💬 ⤵️
#BBCRowing
1/ Having long Covid made me so aware of the expectations we have of what a "good ill person" looks like. I consistently felt pressure to be falsely positive about my illness in order to make people around me feel less awkward.
Massive thanks to
@rachelschraer
and
@Paul_Grant1
for this, and to everyone who contributed. Very grateful for the care that was taken and to be given the space to properly explain my point of view. Think I should add 'anti-recovery activist' to my bio?!
1/ Thank you very much
@bbc5live
for talking about Long Covid and inviting me on to share my experience.
(I did say many people don't recover even with rest, but didn't make the clip)
Feel so fortunate to have spoken at
#UniteToFight2024
earlier today. I had a fair amount of get off my chest about GET/CBT! Thank you very much to everyone who listened and the Unite to Fight team who have done an incredible job pulling this event together.
This!! One of the reasons I am grateful I was a professional athlete when I got LC is that I knew to stop training at signs of illness. When I heard about GET I was horrified - it flies in the face of basic principles of health and recovery
Exercise isn't good for sick people, regardless of the illness. It isn't good for colds, flu, or any other type of infection. The only reason physicians recommend exercise for ME/CFS (or long covid) is that they don't believe it is an ongoing physical illness.
My presentation for
#UniteToFight2024
has changed: as well as participatory research methods, I have added a section about rest and how the GET/CBT paradigm is both useless and extremely harmful. Really looking forward to speaking - the conference is this Wed/Thurs.
1/ I recently started work at Oxford University, on a Long Covid research project as a patient representative from
@long_covid
. It's a fantastic project, that is being run according to the 'participatory research' method - where patients are engaged as equal partners.
As Physician and Scientist Dr. Ziyad Al-Aly told me tonight, we must initiate the conversation to solve the problem of long covid despite pandemic fatigue. I’m going to stay on this as long as it takes until we get answers.
Wow.. being aware of Long Covid and seeing it get so little of the attention it deserves can be a disorientating experience. Seeing a government minister lay it out in plain terms is very refreshing.
German Health Minister Karl Lauterbach provides a crucial update on the ongoing Long COVID situation, as Germany faces a new wave amidst the holiday season.
(with English subtitles)
"Looking after the lives of the nation is the basic responsibility of our leaders and he [Boris Johnson] consistently put his ego and self interest ahead of that."
Felt v good to say that on TV.
Hey long Covid twitter (/anyone else!) I would really like to understand more about how the chronic effects of viruses have historically been ignored. If anyone has any reading recommendations could you possibly drop them below please? Many thanks!
@WoollerEmma
This is one of my favourite parts of this whole thing. I spoke about mental health in the original article that led them to contact me and they mentioned that in their initial emails. I think they thought I was an easy target.
@RobertHMcMullen
@TheNewsQuiz
Hi
@TheSimonEvans
Can I invite you to complete a day of Olympic rowing training? Meet at the club at 6am with 40k of rowing and a heavy weights session. This was my everyday before I got Long Covid. Let me know if I am the type of person who gets this illness.
3/ I just needed to pragmatically explain the affects of the illness and that I was no longer living life as healthy Oonagh, in order to manage expectations of me - but a lot of people were uncomfortable with the conversation.
2/ Combine that with the fact that most people have no idea how severe long Covid can be / how long term it is and a lot of people had no idea how different my life looked and that I had no idea when normality might return. I didn't want/need sympathy.
Covid is in all of these countries, but it is only in the UK that the share of working age people out of employment has risen post pandemic. I would predict that LC is contributing to this UK trend but these graphs would suggest there are also other factors at play.
Really honoured to participate in this patient led conference and so looking forward to sharing the benefits of participatory research. Thank you
@U2Fight_World
for all the work organising this event.
New speaker announcement 📢
In March 2020, Oonagh Cousins (
@oonagh_cousins
) was preselected for the Olympics as part of the GB rowing team.
#LongCOVID
forced an early retirement from professional sport and now she is completing a Social Sciences Fellowship at Oxford University,
I am receiving lots of supportive messages in response to the interviews - thank you, really appreciate it.
I just also want to shout out the many other volunteers who have done an immense amount of work around the campaign and the inquiry, which is often a bit more invisible.
1/ My friend
@EllaBarnard
has tonsillitis. She went to the doctors and received more care and understanding than she has in her entire 5 year experience of post-viral illnesses (glandular fever and then long Covid).
2/ This may be optimistic, but l felt like Long Covid was a bit more on the map than it has been.
For the full interview, I start at around 2:11 into the program:
3/ It's PPI in its fullest and most beneficial form. Our project's website launched today - and I have written a blog about the benefits of participatory research. Click the link to read.
2/ I've only been there for 3 months but I am so inspired by the way
@BethJGreenhough
and Maaret Jokela-Pansini work. The participatory method should hopefully mean more representative research output, but it goes beyond that - it also empowers patients to drive positive change
@cfs_research
If they genuinely cared about helping people they would engage with the feedback that this program has caused an immense amount of harm. Instead they accuse people of not wanting to get better - another very harmful thing to say to patients.
@RorPreston
@AlanCarson15
@RobWust
This is wild to me that I have to say this, but comparing DOMS to PEM is like comparing apples to oranges. Completely different bodily sensations.
1/ Recruiting for research! As part of my PPI work with the University of Oxford, I am looking for female participants to be involved in a bodymapping workshop. It's a social science project studying women's experiences of Long Covid.
@cfs_research
I am not attacking their character - I'm attacking their business model of using me, who they thought may be vulnerable to this level of gaslighting, to reach other patients - and to continue to do harm. They gave it to me for free: this was a marketing strategy, nothing else.
Brilliant documentary on the ME scandal. "The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.” Valerie Eliot Smith 2019
A really moving lecture, thank you
@zalaly
"we need to overturn the ahistoric belief that viruses just cause an acute disease, they cause chronic disease"
It was very striking how researching LC provides opportunities for so much positive change in our understanding of health
"Either you will encounter another pandemic or your kids will. We have paid the price for this horror show, let's learn from it to help us navigate the stormy waters of the next pandemic. Not learning from this pandemic will be a historic mistake"
@zalaly
Had the privilege of watching ITV's drama
#breathtaking
this evening. They have done a magnificent job, it is absolutely devastating. Really hope it leads to a much better national conversation about what frontline workers have been through.
@RobertHMcMullen
@TheNewsQuiz
My point is not that athletes are special, but just that they don't face this ridiculous prejudice that people who get long Covid are lazy
📣 Are you conducting/planning research in to
#LongCovid
?
🌟Book a slot with our newly launched Research Involvement Consultancy!🌟
Ensure your study is relevant, robust and keeps the patient voice at the centre.
More info.:
#PatientInvolvement
3/Don't get me wrong, tonsillitis is not fun. But the gulf between the care that Ella has received for a week long illness that basically just gave her a sore throat Vs for illnesses that have been a 5 year wrecking ball for nearly every facet of her life, is hard to grapple with
1. "Science is not the objective, neutral force it is often misconstrued as... Societal dismissal leads to scientific neglect, and a lack of research becomes fodder for further skepticism"
5/ All would have reduced how sick she has been by a really significant degree. It is mind blowing to me that the medical system does not acknowledge how serious post viral illnesses can be or give the advice that could reduce these illnesses having such a devastating effect.
2/It isn't breaking news that post-viral conditions are dismissed by doctors but there are some moments which throw in my face the simple changes that could make an unfathomable amount of difference.
4/I recognise there are limits to what doctors can do with limited research or treatments but 1. Recognising how sick Ella was 2. Advising her on the importance of rest 3. Providing her with support to take time off work
Thank you
@apresj20
and
@Decathlon
for hosting this event and inviting me to part of it. It is great to see a company holding events like this! Depending on your French, this is a really informative video on
#longcovid
too
@RFH1955
Don't mind at all! It wasn't on purpose but that's certainly how I feel. It's a horrifying situation. We should not need former athletes to highlight that sick people are not lazy/deconditioned.
Great piece on the need for a better definition of LC: "The failure to develop a consensus on a LC case definition has and continues to create problems. Just like a house of cards, if the scientific foundation is shaky, all the layers constructed above are vulnerable to collapse"
Very much looking forward to this! It will likely have more of a rowing/exercise angle than some of the other interviews I have done, if that is of interest
Delighted to welcome GBR oarswoman
@oonagh_cousins
to Crossy's Corner this Thursday 31st August at 4pm BST. Oonagh was provisionally selected for the Olympic team when she got
#LongCovid
and her life changed - essential listening 4 anyone who has suffered, or friends and family
Thank you for the discussion sparked by my last tweet! I can't respond to every reply, but my main thought is: the fact we are having this conversation at all is a scandal. Total failure of govts that the ongoing impact of the pandemic is so poorly measured.
Endless respect for my friend and teammate Caragh McMurtry. She makes speaking out look easy, but she's fought her way through hell, and is now doing fantastic work to stop it from happening to others.
@sunsopeningband
@WhooshMTB
@BBCRadio4
@JamesTGallagher
Agreed the obsession with including exercise in the narrative is infuriating. I've done both and it's offensive to compare the two. Training for the Olympics doesn't take away fundamental human needs. Someone else notified me about this I am trying to get in touch with them.
I have news! I’m excited to announce
@lcstudiesdotnet
, a new website to help people with Long Covid find research studies and clinical trials. I don’t want to bury the lede: check it out at
ALT TEXT: A meme which shows a man getting progressively more excited in response to three different lines of text: 1. 'Jon Stewart covering the Greatest MEdical Scandal' 2. John Oliver covering the Greatest MEdical Scandal. 3. JO(H)N X2 covering the Greatest MEdical Scandal.
In my latest for
@NatGeo
, I wrote about the many nuances and contradictions surrounding the use of exercise as a treatment for postural orthostatic tachycardia syndrome, or POTS for short.
@MatthewJDalby
Yes agreed - not suggesting these graphs correlate with LC prevalence. More countering the idea that LC is the main/only factor driving the number of people out work in the UK, which I have seen on here.
@AaronCa11
Honestly this. The word fatigue is so misleading and doing us such a disservice. So many other diseases make people 'tired' - but the tiredness is seen as a downstream issue, and so noone is suggesting exercise as a cure. Should be obvious it is the same situation in LC / ME
3/ The workshop will be an opportunity to share your experience with other people going through similar things. It will also help us improve our understanding of what it is like to live with Long Covid.
We are very lucky to have
@LaRadarina
Joining us. Rachel is a Singing For Health Practitioner.
We are ecstatic to have
@oonagh_cousins
to talk about her Long Covid journey.
Set a reminder for my upcoming Space!
@AaronCa11
It would be good for us if LC was the cause, but it doesn't mean it's not still economically beneficial long term to invest in research. I think this highlights the confirmation bias that exists in the community, which could damage our credibility longterm if we aren't careful.
2/ Thank you
@edyong209
for articulating the mountain Long Covid patients are having to climb in order to get support required. Really moving piece (again!)
Delighted to welcome
@jessphillips
MP as our newest Parliamentary Champion! 🎉
Jess's dedication to advocacy for women & equalities will be instrumental in creating positive change in legislation & amplifying the voices of those living with
#MECFS
#pwME
#MyalgicE
#Parliament
Very interesting lecture on the history of pandemics. Puts Covid into context - I think this is really important for those who are advocating/campaigning in this space.
Many thanks to Eva Ahren and
@karolinskainst
for inviting me to give the Hagstromer Lecture in Stockholm last November. It was a pleasure and honour to share the stage with David Morens. You can catch our respective contributions here:
@TraceyABurgess
@Naomi_D_Harvey
@vijayiyer312
❤️ it's utterly horrifying how much needless suffering there has been.
I don't know if this is naively optimistic but I have a sense the needle might just be starting to shift, my fingers are crossed.
@TraceyABurgess
@Naomi_D_Harvey
@vijayiyer312
Exactly what Naomi said. Also compounded by the extreme desire to be healthy again which makes people very vulnerable to believing any information which tells them there's something they can do to recover, and neglecting any info that contradicts that.
@Elise_Racine
@long_covid
Totally agree re patient knowledge! It's really cool to be working with researchers who recognise this and want to work with us.
@CounsellingSam
It will be on YouTube! Live streamed at 4pm on Thursday, but you should be able to watch the video anytime after that. This is the link to Martin's YouTube channel:
@misslice
This makes me quite emotional! It means a huge amount that it resonated with you, and thank you very much for sharing it with your doctor. There will be recordings put up on youtube later (not sure when!)