Ben H @benh_mecfs Twitter profile | Pikagi

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Ben H

@benh_mecfs

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ME/CFS patient advocate, @OpenMedF science correspondent. Bedbound. Former: biochemist in training, Powerlifter, PT, Gym Manager. Jazz grad/Musician. F1/Boxing.

Joined July 2016

Don't wanna be here? Send us removal request.

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@benh_mecfs

Ben H

2 years

Medicine needs to stop misattributing and pathologising emotions that are totally NORMAL when living with misunderstood, life-altering chronic illness and/or the frustration that comes from having treatable comorbidities but not receiving the treatment or care one needs.

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@benh_mecfs

Ben H

2 years

It's such a cruel reality that the sicker you become with post-viral illness, the less able you are to advocate for the biomedical research and awareness so desperately needed to improve the situation AND battle against the misinformation that requires you to self-advocate.

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@benh_mecfs

Ben H

2 years

‘And who is your specialist team managing your ME/CFS?’ Ha. Good one.

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@benh_mecfs

Ben H

3 years

10 years sick this month. 5 bedbound. I've had brief moments of being able to grieve for my past self-moments which usually do not present themselves because pure survival takes precedent. It's extraordinarily difficult. So much to say, so little utility. #MECFS #LongCovid #PwME

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Ben H

4 years

You'll never see so many patients so pleased and emotional about having no treatment for their illness. That's how unscientific, ineffective and harmful GET has been. No treatment is better than a harmful one. Here's to biomedical treatments for this devastating illness #MECFS

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@benh_mecfs

Ben H

2 years

I wish I could articulate the enormity and impact of the 'wired but tired' component of ME/CFS. The wording is a dilution of something that is so debilitating. There is no respite in my experience. I haven't had 'rest' in 11 years, other patients suffering for far longer.

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@benh_mecfs

Ben H

1 year

Devastated to pass on the news that Lucy (Lu) @LuPwME recently passed away due to LMS/Leiomyosarcoma. Lu was an incredible patient advocate for the ME community and truly one of the kindest, most thoughtful people anyone could have ever hoped to know. #MECFS

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@benh_mecfs

Ben H

8 years

Thought I knew 'strong' before.But what this illness has taught me is #MECFS patients are some of the strongest ppl on the planet. #nodoubt

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@benh_mecfs

Ben H

4 years

Reading other 'healthy' peeps tweets about #CoronavirusPandemic regarding 'grief' about not being able to <insert random event> reminds me how unbelievably resilient us chronically ill are, and how much adaptation there is to our ridiculous perpetual isolated situation. #mecfs

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@benh_mecfs

Ben H

3 years

Christmas is an extremely difficult time for many with ME/CFS. A time of year that highlights both the exclusionary aspects of the illness+the extreme, daily suffering that does not take a day off. Hoping for moments of peace to all those suffering. Much love. #MECFS #LongCovid

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@benh_mecfs

Ben H

2 years

Time passing is so messed up with chronic illness. Months without seeing your reflection+when finally able, your eyes look even more tired than before, grey hair greeting you. If life+memories accompanied this, all good. They don't though. Just the same 4 walls day in, day out.

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@benh_mecfs

Ben H

2 years

Fixating on deconditioning in Long Covid and other (post)-viral illnesses is akin to worrying about the stove being left on whilst the entire house is on fire.

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Ben H

2 years

Inspite of being bedbound *every single day* for 6 years now, and suffering from #MECFS for 11 years, I'm always astounded at the tightrope we balance on to survive and how little it takes to fall off the edge. V.rare coffee outing in car=inert for 6 days and counting.

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Ben H

1 year

The kindest, most gentle and empathetic GP I have ever had in 12 years of sickness is off work due to #LongCovid . The nurse that took my bloods has two colleagues off with #LongCovid . This is not a big practice at all and will have huge ramifications. Absolutely gutted.

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@benh_mecfs

Ben H

4 years

It's #MEAwarenessDay today. Very hard choosing what to say about #MECFS . So I'll mention what it takes away: -Your friends -Your family -Your hobbies -Your career -Your studies -Your housing -Your relationships ...your 'life' It's a level of suffering that is unimaginable.

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Ben H

3 years

When I first became ill 10+ years ago, my body broken by post-viral illness: Me: 'How long will this last?' Dr: 'Probably a few years...is there anything else?' Me: 'Um...what about exercise...er, my education...my job...?' Dr: *shrugs* #MECFS #LongCovid #NEISvoid

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@benh_mecfs

Ben H

3 years

As someone with #MECFS , it's such a cruel, inhumane irony to simply not have the luxury or choice of being able to exercise and the myriad of benefits associated with that, yet painted with the totally unevidenced brush of avoidance behaviour and fear of exercise. #MECFS #PwME

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Ben H

5 years

#MillionsMissing myself for 7 years, bedbound for 2 1/2 years, thousands worldwide for much longer. @NIHDirector make the right, just action and increase ME/CFS funding to the level that represents the incredible disease burden and suffering.

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Ben H

11 months

There is no ‘rest’ with #SevereME . Beds are transformed to prisons in which the sentence is unknown and unfathomable endurance takes place every single minute of each day. Thinking of all those with #SevereME and #VerySevereME today and always. 💙 #SevereMEDay

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Ben H

2 years

The degree of restraint you have to exercise when living with #MECFS is mindboggling--on how small a scale this needs to be applied and how large the consequences. There is never a free lunch, you'll always end up paying--it's just a question of how much and for how long.

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Ben H

2 years

The 'best' healthcare experience I ever had-in the absence of curative treatment-was an emergency Dr who not only investigated biomedically, but was empathetic to the point of saying 'I'm so sorry this happened to you'. This was 7-8 years ago, the humanity of it still hits deep.

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@benh_mecfs

Ben H

3 years

Taking a little break from Twitter. After a decade ill this year and almost 5 years severe, pacing (cognitive) is still a real challenge. Take care guys 💙

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Ben H

4 years

#MECFS is just ridiculous. I never think I'll get used to any part of it, despite it being a decade ill next year. You have to plan-with absolute meticulousness-every minute of living, every decision, down to conscious breathing. Science cannot work this out fast enough.

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@benh_mecfs

Ben H

4 years

If you are in good health, treasure it, nurture it and acknowledge it the best you can because it is absolutely not a given and it really can be taken away at any moment.

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Ben H

4 years

#MEawarenesshour The after-effects of doing a tiny bit of advocacy yesterday. It's the best I can manage today I'm afraid, I cannot think. #MECFE is absolutely brutal, and PEM from the tiniest of things.

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Ben H

2 years

I'm unable to add much to this year's ME Awareness Day, but I didn't want the illness to silence my voice if I had the capacity to type. Gratitude to all the researchers working so hard for us and to all fellow patients and advocates. #MEAwarenessWeek #WorldMEDay #PwME

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Ben H

3 years

5 years in with #SevereME , I'm longing, pining for the days where I was 'only' at my 'mild'--a state already so disabling I was unable to exercise, had to give up my education, only work part-time, cook only occasionally and walk slower than most 80yr olds. 1/2 #SevereME #MECFS

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@benh_mecfs

Ben H

4 years

#MEawarenesshour Due to circumstance, I moved in with my parents 2+ years ago. They're incredible. They look after me. But damn it is SO difficult not being able to 'look after' them, as I want to--should be--doing. Desperate for science to re establish this natural order.

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@benh_mecfs

Ben H

4 years

I'll never, ever, get used to the severity of crashing after <insert whatever activity, including breathing> and PEM with #MECFS . No matter its been 9 years now and 4 years severe/bedbound, I can't get used to it. It is so disproportionate. Photo taken with aid of klonopin.

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@benh_mecfs

Ben H

3 years

I made it. My best mate with me.

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Ben H

6 years

Dear @NIHDirector , I know you are a guitar player. This is me attempting to play (first take as no energy for more) one of my favourite songs. Req Propanolol etc just to sit upright as bedridden. First time playing ‘properly’ in I think a year. Please increase #ME /CFS funding

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@benh_mecfs

Ben H

3 years

It's a false premise expecting the NICE guidelines to be accepted by all and only then can it be published. You follow the evidence. The evidence is very, very clear to remove treatments that are at best useless, and at worst, capable of great harm. #MECFS #PwME @NICEComms

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Ben H

5 years

Thank you to everyone for the birthday wishes. 32 today, crazy. I don't think I'm in the minority when I say I find birthdays very difficult, but I am grateful I've been able to migrate from my bed for a v. rare outing outside today. Here's some cake for you all:

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Ben H

4 years

Managed to play a few mins of guitar today. How does someone severe play a bit of guitar? Meds, inevitable crash. But I had to because it's incredibly cathartic for me and needing that atm. First take as always and its just me noodling around. Twitter cut me off, for the best 😂

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Ben H

3 years

1/ Tomorrow is the wedding of someone very close to me. Being bedridden, it's been planned with military precision to try to get me there, and is going to be one of the hardest things I've done in 5 years. Inspite of all this, I have no idea if I will be able to go. #MECFS

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@benh_mecfs

Ben H

2 years

Trying to keep going in spite of the post-August heatwave crash and subsequent huge decline. Trying to keep it real in lieu of pity, whilst highlighting the reality of the situation. I am very broken right now. In advance-thank you to all those at #MillionsMissing tomorrow. 💙

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@benh_mecfs

Ben H

3 years

New research update video with Prof. Ron Davis, March 29th 2021. Huge thanks again to Ashley Haugen @AshleyHaugen88 for her hard work doing this, also to Ron and Janet. @JanetDafoe @DafoeWhitney @CFSRC #MECFS

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Ron Research Update, March 29, 2021

Research update from Ron Davis March 29, 2021For more information and to donate please visit our website:http://med.stanford.edu/sgtc/general/CFSRCSummary by...

www.youtube.com

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Ben H

2 years

Ah, the little laugh when you read a scientific paper and go to bookmark it, only to realise you have already bookmarked it, read it multiple times and made notes years ago as part of the crusade against the illness. 🤨

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Ben H

3 years

Here's to a fruitful 2022 for research into #MECFS and #LongCovid . Gratitude to the extraordinarily empathetic, intelligent and supportive community here.

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Ben H

1 year

I wish the general public could have a glimpse into how utterly devastating this illness is. How many patients it affects, how unimaginably severe an illness it is. Family fulfilling roles of carers, giving up dreams and years because there is so little help. #MECFS

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@benh_mecfs

Ben H

3 years

Can you imagine any other illness where an ANECDOTE/ N=1 is given national television coverage without any equivilant medium for rebuttal? #LongCovid #MECFS

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Ben H

4 years

#MEAwarenesshour The patients, carers and scientists in the #MECFS community are some of the smartest, most empathetic people I've ever met. If you're suffering #LongCovid or are #covid1in20 ,we are here for YOU. Please be here for us. We can work on this together. 1/6

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Ben H

5 years

I may be bedbound and clothes may not be the most important of things, but I've always wanted a proper flannel shirt and bless my mum, she's gone and got me one as an early Christmas present. I'm pretty stoked.

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Ben H

3 years

This was the last time I was able to lie down outside for a brief 15mins--April 2020. Over a year later and ever since I have declined. It is beyond absurd. #MEAwarenessDay #MECFS #PwME

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Ben H

4 years

Just going to say the obvious, but we'd all be a lot, lot better off if #MECFS and PVF was taken seriously, say, 50+ years ago and false narratives were not written destroying millions of lives. Watching #longcovid and the ramifications of the above is absolutely heartbreaking.

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@benh_mecfs

Ben H

2 years

New video below on the Itaconate Shunt ME/CFS hypothesis with Robert Phair and @JanetDafoe ! I've created a thread with some of the basic points: 1/12 Itaconate shunt ME/CFS hypothesis by @RDPhair , Ron Davis and @C_W_Armstrong .

@OpenMedF

Open Medicine Foundation

2 years

We are delighted to share a new video update with Robert Phair, PhD and @JanetDafoe , PhD. Today Rob will talk about the Itaconate Shunt Hypothesis for ME/CFS. Watch now: #MECFS #PwME #MedED #medtwitter #LongCOVID #MyalgicE #Medicalresearch

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Ben H

1 year

On today’s #MEAwarenessDay , do not forget those that are too sick to even type a simple message to generate awareness. An illness so debilitating, it often removes the literal ability to even be able to physically write/talk about the illness itself. #MECFS #PwME #WorldMEDay

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Ben H

1 year

Taking a little break, or at least I hope just a little break from here. I am always bedbound and between #SevereME + #VerySevereME but there are stages and I have declined rapidly in the last day to not even tolerating the tiniest amount of light or sound. Love all you guys. 💙

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Ben H

4 years

#MECFS is such a ridiculously debilitating illness, the depths of it know no bounds. For me, this is illustrated by the fact I'd give anything to go back in time to where I was 'only' totally housebound. #MEawarenesshour #severeme

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Ben H

4 years

#MEawarenesshour Popular myth: You can just 'try harder' with #MECFS and get better. Nope, no you can't. Sadly-and very damagingly-this mentality is STILL widespread in medicine + society towards MECFS patients due to false narratives, laziness, ignorance and poor 'science'.

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Ben H

3 years

Almost 10 years to the day, apparently. :( So happy. I'd worked hard to be accepted onto biochemistry at university. About 6 months later, bam, ME/CFS. Dysfunctional illness beliefs? Secondary gains? Deconditioning? BS. #MECFS #PwME

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Ben H

4 years

#MEawarenesshour I'm going put some gratitude out there tonight, to all the incredible researchers working on #MECFS . It's an incredibly hard disease to work on, but know that every patient is so grateful for your contribution, engagement and endeavour. 1/3 #MEawarenesshour

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Ben H

4 years

I think I have forgotten what medical compassion feels like because after a very difficult couple of weeks, the kindness, consideration/general 'we'll make your life just a bit easier' shown from a medical secretary had me with tears in my eyes. #MECFS #chronicillness

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Ben H

4 years

Very strange (but expected?) to see the omission of ANY reference to #MECFS in the new #LongCovid guidelines. Unless I've missed something. Acknowledging the stressor is so important, but ignoring history and treating post-viral sequelae as if it's brand new is asinine.

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Ben H

4 years

#MEAwarenesshour Having #SevereME and being in the ludicrous situation of having to be your own advocate, doctor and citizen scientist without any external help, whilst battling to make it through each day is indescribably exhausting. There's been no respite for 9 years.

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Ben H

4 years

I don't have much to say for #severemeday this year. In a very bad relapse on top of this state, rendering me even more immobile for the day with tiny pockets to do the most minor things, like...move. I'm 4 years bedbound, and still no way to describe it. #severemeweek 1/2

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Ben H

3 years

Thank you to all the truly remarkable scientists that are working so tirelessly for us, that acknowledge our plight and lead by example. -Ron Davis + team, @JanetDafoe @MBVanElzakker @microbeminded2 @DrMaureenHanson @BhupeshPrusty @babyy_po @davidtuller1 @keithgeraghty

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Ben H

3 years

I always find this week difficult. It includes inevitable introspection of the illness (and harmful treatment) that has destroyed so many others' lives, as well as my own. It's heartbreaking. #MEAwarenessWeek2021 #MECFS #MyalgicE #MillionsMissing #MedTwitter

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Ben H

6 years

#mecfs is such a strange illness. Trying to live in the present is really all one can do, but the drop from mild/moderate to severe has been unreal. I’d do anything to be back at the 30% a few years ago, where I could never work out, only work part time, but had some level of 1/2

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Ben H

3 years

New research update from Prof. Ron Davis, March '21. Big thanks to Ashley Haugen @AshleyHaugen88 for this. @JanetDafoe @DafoeWhitney @CFSRC

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Ron Davis Research Update March 5, 21

Research update from Ron Davis during Covid-19, March 5, 2021For more information and to donate please visit our website:http://med.stanford.edu/sgtc/general...

www.youtube.com

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Ben H

1 year

Good to see a firm rebuttal from NICE in response to the atrocious analysis utilised in the @guardian article today (after the helpful piece by @SpichakSimon ). It’s honestly like clockwork-same old tired, evidentially discredited opinions and strawman arguments. #MECFS #PwME

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Ben H

3 years

@NICEComms Reposted as a response: It's a false premise expecting the NICE guidelines to be accepted by all and only then can it be published. You follow the evidence. The evidence is very, very clear to remove treatments that are at best useless, and at worst, capable of great harm.

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Ben H

4 years

Parents missing daughters and sons. Sons and daughters missing parents. Siblings missing brothers, sisters. Family missing family. Friends missing friends. And on and on...for decades. It is NOT just one person affected when someone has ME/CFS. #MEawarenesshour

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Ben H

5 years

For those of you not able to watch Ron speak, they are developing a $200 dollar instrument to look at the plasma/what's in blood as current $30,000 machine only enables very small amount of fractionation (I forget exact word). New $200 dollar instrument can do a huge amount more.

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Ben H

4 years

Just putting this out there for #longcovid patients. Simon Wessely is a large part of the reason #MECFS patients have faced such incredible adversity (see literature excerpts)-inspite of his apparent caring here. This thread is an important one. Astonishing example of hubris.

@WesselyS

Simon Wessely

4 years

Good letter in @bmj_latest from doctors with #longcovid citing #RSMLive “Before we get people exercising" need "to be sure it’s going to be safe. We need proper evaluation of cardiac and respiratory function" &. "take things slowly and in a paced measure.”

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Ben H

3 years

Have huge empathy for those with #LongCovid -seeing people desperately trying to navigate a totally broken healthcare system that has not been designed to deal with post-viral illnesses. Pushed psychosomatic-based 'miracle' cures+unsolicited inane advice. Heartbreaking. #MECFS

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Ben H

4 years

I'm so grateful to have my family/carers, who sacrifice so much. I heard a song yesterday which profoundly affected me, the subject being the importance of photographs. Being bedbound, I hardly ever have photos taken. I'm trying to change this. #MEawarenesshour #unsungheroes

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Ben H

4 years

I get to see my family today, put on some nice clothes (which feels great) and maybe even have some cake, so in the order of promising to take some more photos, here is me and my brilliant mum.

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Ben H

2 years

Gratitude to all those advocating in today's #MillionsMissing movement in D.C. , knowing the effect this will have on their health and still doing it anyway, for the cause. 💙 #MECFS #LongCovid #StillSickStillFighting

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Ben H

3 years

In solidarity with those protesting @NICEComms delaying of the #MECFS guidelines. Sick 10 years, bedbound 5+ years. Damaged by GET, never recovered. Not a new photo, but nothing has changed. #PublishThatGuideline #ProtestNICE4ME @TheChronicColab

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Ben H

1 year

It��s possible to speculate on possible differences between LongCovid and ME/CFS without undermining each other. Many with #LongCovid fulfil *dx* criteria for #MECFS . Some don’t. We need substantial research to see if there are the same *pathophysiological* mechanisms at play.

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Ben H

3 years

Beyond tired of the attribution of recovery from post-viral illness to character traits. If you're unlucky enough to ever have post-viral illness BUT lucky enough to recover, humbly acknowledge your physiological fortune. #MECFS #LongCovid

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Ben H

4 years

#MEAwarenesshour I miss this goofy, carefree spirit. 9 years ago, during a beautiful summer of training, surfing, friends, bbq's and the sea on the beautiful Cornish coast. It's still the picture I signed up with on one of the #MECFS forums. I haven't the heart to change it.

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Ben H

2 years

I don't know how isolated I am in this, but my mental health is massively relegated, because of the very legitimate fear-and historical reality-that it will only exacerbate and fuel misconception around my (post)-viral illness=treatment becomes even worse. #MECFS #LongCovid

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Ben H

4 years

#MEAwarenesshour Probably my favourite photo of me (I don't have many) taken just before I got ill. So much hope, ambition, spontaneity, laughter and vitality. So much...'life'. #MECFS and subsequent GET ripped that apart. It's been roughly...3285 days sick since that photo.

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Ben H

4 years

Just wanted to say a happy 60th birthday to my wonderful mum. She's had to be my carer, but never once has she complained, looking after me day in, day out. She also outrageously funny, mostly accidently. Happy birthday mum. (P.s. sorry Dad for cutting you out of the photo...) x

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Ben H

5 years

#SevereMEday today. To describe me/cfs as 'mild' has always been, in my opinion, a huge disservice due to the huge disabilities that even 'mild' can bring. But severe is a completely unconscionable, unimaginable level of disability. #mecfs #SevereME #Aug8th

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Ben H

2 years

People are able to empathise far more if they learn of my life prior to illness. In reality though, it *really* should not matter. I wish people could simply empathise without needing that prior context. The suffering is now, the suffering is constant and it is profound.

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Ben H

4 years

1st consult with a Dr after being DX with MECFS genuinely went like this: Me: how long will this last? Dr: *shrugs*, probably 2 years. Me: So I'll have to live like this until then? Dr: *shrugs* The joke? That would have been an incredible outcome. #MEAwarenesshour

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Ben H

2 years

It is a such a traumatic experience to be treated and to see so many people being treated so inhumanely and outrageously apathetically by the medical profession-knowing and screaming at how deeply wrong and unjust it is and yet still so widely practised and accepted. #MECFS

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Ben H

4 years

#chronicillness is reading research to try and help with your condition and then realising you have already read and bookmarked the research from 3 years ago but completely forgot about it because...chronic illness.

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Ben H

3 years

Just had an extremely helpful conversation with a nurse. They could not have been more helpful, efficient or put plainly-kind. I'm so conditioned as many of us are to everything being such an uphill battle that what should be ordinary becomes extraordinary. #MECFS #PwME

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Ben H

4 years

Hope and love from a very dishevelled Ben for all #pwme all over the world. I hope today/tomorrow is as easy as it can be. #MECFS #ChristmasAintTheSame

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Ben H

6 years

7 years sick anniversary-not particularly important-but throughout this year I can't help shake the thought before I was sick, how many houses did I walk past that were home to people who were bedridden or housebound from this illness, myself being oblivious to their suffering?

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Ben H

4 years

#MEawarenesshour I think there is a lot in life you can imagine happening, not being surprised when it happens and thus being able to cope. But the monumental loss of 'energy'/base vitality that is so fundamental and intrinsic to life itself really is not one of those things.

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Ben H

6 years

3/3 That is not to underestimate mild/moderate #mecfs , I was there for 4 1/2 of 6 1/2 years. Not being able to exercise from day 1, having to rest between stairs, stop my degree all with what was ‘mild’ #mecfs . The term ‘mild’ for the disease is such an injustice in itself.

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Ben H

4 years

Dr's phonecall, almost verbatim: Me: 'I have ME/CFS, I've been bedbound for 4.5 years now' Dr: 'Can you get down to the surgery for bloods?' Me: 'Er...no--I'm bedbound.' Dr: 'So how do you get to hospital?' Me: 'I go in an ambulance'. SO sick of pointed questioning.

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Ben H

4 years

This picture has to be 9 years old, near to the last time I felt remotely healthy, at one of my favourite places in the whole world-Glastonbury Tor. I really miss this fella, and what he could do. I couldn't even be carried up to the first step of the Tor now. #MEawarenesshour

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Ben H

5 years

3/3 The most outrageous thing I see about the whole situation is the fact that most of us will not have the ability to have the test, currently. Do I think it will be the cause of ME/CFS for all patients? Absolutely not. But even if it's a small subgroup, it's utterly worthwhile

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Ben H

2 years

New pilot study in #MECFS "Phenotypic characteristics of peripheral immune cells of Myalgic encephalomyelitis/chronic fatigue syndrome..." Authors include Prof. Ron Davis ( @JanetDafoe ,) @fereshtehjahan1 and Mike Snyder @Snyder_Lab_SU (as well as others).

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Phenotypic characteristics of peripheral immune cells of Myalgic encephalomyelitis/chronic fatigue...

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex chronic multi-systemic disease characterized by extreme fatigue that is not improved by rest, and worsens after exertion,...

journals.plos.org

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Ben H

5 years

1/3 I've kept quiet about the CCI because it's a sensitive issue and I understand why. But I can tell you that as a severe patient who does not know what is causing my ME, I would sure as hell like an MRI to rule it in or out as a possible factor or co-morbidity. The fact that..

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Ben H

2 years

I woke up today extraordinarily frustrated at the relentlessness of the illness, completely forgetting it was #SevereMEDay . This frustration is unusual as all energy is rationed simply to try to measure and make it through the day. To all those in a similar hellish situation-💙

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Ben H

4 years

One of those days today. The world feeling so heavy, so broken. I used all my strength to walk a few metres+ take a look from inside at the scenery, longing for that fresh air. Think a lot of us feel like this at the moment. But we will carry on. Love fiercely, fight fiercely.

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Ben H

3 years

#MEAwarenesshour The one ubiquitous notion that is embedded in medicine I wish could somehow be revised? That exercise is a cure-all. Exercise can--and does--damage, disable and exacerbate symptoms in #MECFS . #MyalgicE #MedTwitter

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Ben H

7 years

As Xmas nears, it can be an incredibly difficult time for PWME. I’m thinking of all of you, our carers and families for whom I’m so grateful, and our incredible scientists working for us. Gratitude and much love to you all. X

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Ben H

4 years

If I had coffee at 4:05am this morning, I'd have spat it out- #LongCovid featured on the main page, as the focal feature on BBC news @BBCNews . Fantastic for LongCovid. But absolutely no mention of #MECFS despite mentioning PVFS. Will BBC ever give due recognition to ME/CFS?

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Ben H

6 years

The holidays are crazy hard for those with #chronicillness , I'm wishing you all a moment of peace and solidarity. You guys are my family, no matter where you are. Thanks for the follows in 2018. Much love.

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Ben H

5 years

Thank you @CMonaghanSNP for your fire and impassioned, educated speech, thank you to all MP's who represented their constituents and provided a much-needed voice. Here's hoping for meaningful action, overdue for far, far too long. #MEDebate #MEcfs #millionsmissing

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Ben H

4 years

I just want to reiterate that any #MECFS researcher or physician that genuinely wants to help us, conducts good solid research and listens to any constructive criticism, patients absolutely REVERE. We just can't stand rubbish 'science'.

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