Aspiring research scientist, proudly awkward 🤓 Tweets are not medical advice, I am not a doctor!
Aug 17, 2021 • 9 tweets • 3 min read
@NICEComms what the hell are you doing? If some professionals don't like the new evidence-based guidance they just have to suck it up. Don't let them boss you around! 250,000+ patients have been waiting 14 years for this guideline! To delay is unethical. nice.org.uk/news/article/n…@NICEComms the professionals who disagree will never agree because they have built their careers and reputations on delivering harmful and abusive "treatments". Your job is to protect patient safety, NOT to pander to their demands because they are throwing a tantrum.
Jan 31, 2021 • 35 tweets • 7 min read
The outrage is not that she fit better. The outrage is that she stated very firmly on national television with no caveat, that there are no conditions not improved by exercise. Many people with viral sequelae have been saying for years that exercise has made them more disabled 1/
And the new draft NICE guidelines for ME/CFS which often has a viral onset specifically say that ME/CFS patients shouldn't do graded exercise. Clare is fully aware of this but still made a sweeping and very firm statement that all conditions are improved by exercise. This 2/
Jan 14, 2021 • 23 tweets • 9 min read
@trishgreenhalgh Maybe you could post something supportive of ME/CFS patients? I read his tweets and they were not abusive, even if he did misunderstand you he wasn't attacking you. But ME patients have been really badly harmed by the fact that whenever we have tried to report harms from GET, 1/@trishgreenhalgh we have been accused of being anti-science activists and bullies, aggressive etc. as a way of delegitimising our concerns. This has soured the relationship between patients with ME and healthcare professionals. As the NICE guidelines say, patients have often lost trust because 2/
Nov 12, 2020 • 29 tweets • 12 min read
@BrendonStubbs Ok I have one last thing to comment on then I will shut up. I have also worked with people in very difficult situations. I was a youth worker. I have worked in some of the most violent neighbourhoods in Latin America. I have worked in the UK with drug users, people who cycle in
@BrendonStubbs and out of prison, people who would come to my office after escaping from their secure mental health units, people who have grown up in the care system and experienced significant trauma and abuse. Mostly they were respectful but sometimes they were aggressive. I am sure some
Nov 12, 2020 • 9 tweets • 4 min read
@BrendonStubbs I think comparing ME/CFS with other conditions and saying "well if they can do it, why can't you?" Is not helpful, because ME is distinct in the fact that exercise exacerbates our disease. We have a pathological autonomic, metabolic and immune response to exercise. That's why.
@BrendonStubbs It's not that ME patients are somehow less reasonable and less open to discussing graded exercise than others just because we're difficult or prejudiced. It's because our condition is not like the other conditions you list. A key, defining feature of our condition is that 1/
Nov 10, 2020 • 22 tweets • 5 min read
@alastairmiller3 You said there has never been any evidence of harm from CBT & GET. Thousands of patients have reported harms. I have had ME/CFS for 11 years and I can tell you CBT & GET have been traumatic & harmful for me and many others. Patient voice is evidence.
Also, CBT is still available in the new guidelines. GET is rightly out because so many patients have been harmed and patient safety I'd paramount. But the new guideline explicitly says that people who feel able to and want to increase their physical activity can see a specialist
Oct 18, 2020 • 9 tweets • 2 min read
I don't want to be insensitive to people who are struggling, but am I the only one who isn't finding the pandemic-related restrictions that difficult, because they are less restrictive than my normal life anyway? I keep seeing people complaining that they are really struggling 1/
with the restrictions and they just want it to end, really upset because they have gone a full day without seeing someone. Of course it's terrible that people are struggling so, but I have kept wondering "why don't I feel that way?". I'm pretty sure it's because my life was 2/
Just an FYI for anyone who has been diagnosed with ME/CFS who has had COVID-19 and is thinking of donating convalescent plasma:
People with ME/CFS are not allowed to donate blood (at least in the UK).
You might not be told this as not everyone knows.
1/
Why can't people with ME/CFS donate blood?
Officially:
Originally the ban was introduced because it was unclear whether ME/CFS was transmissible by blood (e.g. possible virus in blood).
Currently it's because the NHS says donating could make our condition worse.
2/
Aug 8, 2020 • 9 tweets • 3 min read
Reasons why, when doctors suggest my #mecfs is anxiety or depression, I firmly disagree. It's not because I deny that anxiety and depression are valid and debilitating conditions. It's not because I would be ashamed to admit if I had either.... 1/
... It's not because I am delusional. It's because my mood is good in general, I feel calm in general, and there is very little correlation between my mood, mental state and physical symptoms. Here is my mood diary vs physical symptoms scores. Green is good, red is bad:
Jul 12, 2020 • 7 tweets • 2 min read
#LongCovid#covid1in20 the #mecfs community needs your help! For decades, ME patients have been left permanently disabled (wheelchairs, bedridden) by grades exercise therapy. Fir decades we gave reported these harms and asked for the treatment to be removed 1/
from the NICE guidelines. In 2017 NICE finally agreed to review the current guidelines which were 10 years old at the time. The new guidelines won't be published until 2021. We have been asking NICE since 2017 to add a warning to the front page of the ME/CFS treatment 2/
Jul 8, 2020 • 8 tweets • 9 min read
@MEwarrior_au@GrisjaG@amyismall@AnilvanderZee And yes that's a really good point for doctors to know too. Most ME patients are traumatised by feeling neglected, stigmatised, mistreated etc. by healthcare professionals. So actually GPs could really help be addressing that explicitly. They could ask about it, and state that 1/@MEwarrior_au@GrisjaG@amyismall@AnilvanderZee they will do their best not to abandon/stigmatise/harm the patient, and that they would like the patient to keep in touch so that they can work together, and to tell them if they are feeling traumatised. That would make such a huge & meaningful difference to the patient. 2/2
Jul 7, 2020 • 14 tweets • 6 min read
@amyismall Thank you for sharing your story and I'm sorry you have been having long COVID - it sounds awful. Yes exactly - with ME you can get so weak that you can't move your face muscles to speak, or so exhausted that sounds become too much to process so they are painful... 1/@amyismall I think there's a lot that can be taught about ME at least, in terms of what we do know from biomedical research, and some good tips for management and ME-friendly care e.g. pacing, low sensory environments, concise communication with written bullet points of instructions, 2/
Jun 1, 2020 • 6 tweets • 2 min read
I don't want to be a silent bystander, but everything I think of to say feels impotent and inept. No words can ever make up for centuries of horrific violence and abuses against black people, whether overt such as slavery and homicide or insidious such as systemic inequalities.
The magnitude & complexity of the topic is also too much for a Tweet. But racism, whether intentional or not, is a product of epistemology and epistemology shapes both individual actions & entire global systems. We need to address it at its epistemic roots, in my humble opinion.
May 20, 2020 • 13 tweets • 6 min read
@PaulGarnerWoof Hi Paul, thank you for sharing your story I am sure it will help many. I am very sorry to say that when I read your first blog ending with "and today the disease is lifted" I thought 'oh poor you, just you wait a few days'. I am very sorry but what you describe sounds just 1/@PaulGarnerWoof horrible and just like ME. I got ME overnight 10 years ago when I contracted glandular fever and what you are experiencing sounds so similar. E.g. I did too much housework last week as was feeling better and this week I feel like I am near death (though I know I am not). 2/
It's not something that a person can cure themselves from. It is unrelated to attitude.
It doesn't matter how hard a person tries or how positive they are.
So please be supportive of anyone you know who has ME.
World class scientists have not yet figured out the whole picture with regards to why people with ME are sick, and there are no licenced medications.
Behavioural therapy can be a coping strategy but is not a cure & can be very harmful.
My intention is not to frighten anybody, but 10 years ago I got a virus and it left me disabled.
If you have #COVID19 & experience debilitating fatigue afterwards, please take it easy. Don't push too hard or too fast.
Viruses trigger ME in a small % of cases.
There isn't any evidence yet that COVID-19 can cause ME.
But a percentage of the population is thought to be genetically predisposed to develop ME after bad viral infections.
It's quite common - estimates are often ~1%, and the 2009 Swine Flu led to a number of ME cases.
Nov 23, 2019 • 4 tweets • 1 min read
A nice story: today our neighbour, who runs our local corner shop, served me when I went to buy a diet coke. I had walked there. He said 'Um, I have seen you using a wheelchair...' and I thought 'oh no, am I going to have to explain that I am not faking?'.... 1/
...but before I had time to get my defences up, he said 'I was afraid to ask you because I didn't want to offend you, but I saw you are not well and I wanted to take your bins out for you. I debated with my wife whether it would offend you if I did, so I didn't...' 2/
Jun 9, 2019 • 39 tweets • 7 min read
I am so fed up with people claiming to absolutely know what causes #mecfs. People, we don't know for sure yet! We are getting closer to knowing, lots of leads and good research, but arguing that you know and that everyone else is wrong is ridiculous!
I have seen so many people say 'It's Lyme', 'It's mould', 'it's thyroid', 'it's CCI', 'it's enterovirus ONLY', 'it's EBV', 'It's not EBV'... There isn't enough scientific evidence for any of those claims. People seem to have different triggers. We don't know for sure.
Nov 2, 2018 • 12 tweets • 4 min read
The thing that really upsets me about the BPS/MUS brigade is how the whole movement aims to discredit the intelligence of patients and our ability to recognise symptoms in our own bodies. The assumption we can't tell the difference btwn anxiety, deconditioning, and illness 1/
I am very aware (note: NOT 'hyper-vigilant') of my own body. I know when I am anxious, when I am sore because I haven't moved enough, and when I am sore and ill because I've moved too much. These three things all feel different. The BPS model assumes we don't know this. #MECFS
