markmooch
@MarkMooch
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Elder Millennial & Social Justice Warrior. ME Patient. Drummer. Northerner. Pontificate a lot. Cannot read research papers due to fatigue. Dry Humour. 🌱
London
Joined November 2009
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A disgusting and irresponsible article about young people who are struggling with being chronically ill, printed in prestigious misinformation journal the Daily Fail. This will harm people. Well done
@emmajames3
. A reminder not to support this publication or the Metro.
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Unfortunately my father passed away yesterday, he had terminal prostate cancer but to our knowledge wasn't actively dying, it happened suddenly and it was a shock to us.
I feel like ME robbed me of quality time with him that I will never get back.
I'm heartbroken.
RIP Dad.
💔
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Do any ME people find that emotional stress/shock can completely knock them out straight away? It’s not delayed like PEM. Or is this kind of thing related to hEDS or Neurodivergence?
It seems to be one of the worst triggers for me, maybe causing permanent reduced baseline. . .
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There are ME patients being starved in hospitals right now, several others haven’t made it. That’s why we campaign for urgent changes in the way ME sufferers are treated by the health care system now.
#DontLetMEDie
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@SabjiHunter
@CrimeLdn
What’s the chances, a carpenter, shopkeeper and a jungle explorer got in to a disagreement.
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I rarely hear anything about ME in the elderly, why is that? Because they’re offline? There are less elderly then non-elderly people? People are more likely to get ME when younger adults and it wasn’t as prolific pre 1980’s?
Hope they’re being represented somehow, if not then..
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Can ME effect the making of memories? I know brain fog can make it harder to recall memories but trying to recall times in my life over the last few years I’m finding a struggle. Maybe I wasn’t able to be very present in the moment because of it all and thus a memory wasn’t made.
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@ITV
@Suej1959
ME/CFS.
Psychologisation of biological illness because it’s 2nd biggest financial burden on insurance industry. Therapy cheaper than immune treatment.
Fraudulent £5m PACE Trial (only research DWP ever funded), UNUM Provident revolving door with DWP.
Patients bed bound decades.
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A reality of ME, last nights sleep laundry, 5 x boxer shorts and 3 x T-shirts all wet from night sweats. I wake up cold and wet several times a night, it’s exhausting, the T-shirts are worn because the bed sheets might still be damp after drying with a hair dryer, half asleep.
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A longer established ear puncture company called AcuPips has made a video and post on Facebook saying what ear seeds can and can’t do - and the news is in, they can’t cure ME. They had to make the video because of ridiculous claims in the media and lots of messages from public.
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When people are viewed with scepticism, disbelieved, mistreated and unsupported by parents, friends, family, school, social workers, nurses, healthcare workers, employers, benefits systems, whilst struggling with being young and chronically Ill - is that good for mental health?
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Acuseeds have a 2 star rating on trustpilot from 39 reviews. Seems a lot of people aren't happy with the product or service with the inability to cancel an order, only getting part of it or seeds falling off and into the ear canal, aside from not working.
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@SabjiHunter
@CrimeLdn
Old brother was just watching until man started throwing his produce and then he pulled some sort of incredibly effective martial art move to put him out, meanwhile the police are unable to control their suspect.
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I’ve sent this letter via instagram
message or email to Steven Bartlett, Sara Davies, Deborah Meaden and Giselle Boxer regarding her pitch of AcuSeeds on Dragons Den and how it came across as touting an unsupported treatment for ME.
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Acu Seeds debacle.
Thanks to
@TheCanaryUK
we have an easy way for everyone to complain to Ofcom via email. Enter a few details on a form in the article below and boosh.
For max visibility tweet the link at 8pm for ME awareness hour.
#DragonsDenConnedME
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@wildersreese
I spotted it today, didn’t take long for Emma James to block me. Seems she doesn’t want to know.
A disgusting and irresponsible article about young people who are struggling with being chronically ill, printed in prestigious misinformation journal the Daily Fail. This will harm people. Well done
@emmajames3
. A reminder not to support this publication or the Metro.
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Too good to only share to instagram. GP struggles with Cheryl Cole.
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@StevenBartlett
Steven, did you do due diligence on the ME / Chronic Fatigue Syndrome claims of Giselle and her doctors? Please don’t market this sufferers without proper scientific proof. Also an explicit and public clarification is appreciated.
Latest episode of
@BBCDragonsDen
:
Giselle recalls she was housebound with ME for a year [at 26yo], doctors told her that she would never recover or get pregnant. Ear Seeds were part of the regime that she believed aided her recovery. Shortly after her illness she got pregnant.
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Why does he feel safe enough to say this? Probably because he is able to fall back on well established tropes and prejudices.
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@PutrinoLab
It’s hard to imagine a more vulnerable position for very severe ME patients like this. Imagine being this ill without having supportive, understanding and knowledgeable people around you. Many mild ME patients don’t have that even. Imagine if building works started next door.
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Where have we seen nonsense like this before? The experts quoted have very little in the way of solid scientific research evidence to back up their claims.
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Unfortunately it’s junk like this that validates the people around chronically ill patients with hard to diagnose and often misunderstood conditions, that the illness is psychological or being being played up to, including from parents & doctors. People die from such misdiagnosis
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Myalgic Encephalomyelitis needs its own drama, this scandal has been going on for a century and picked up pace in the 1980’s. The Long Covid prognosis would be radically different if ME had been dealt with. 100,000’s lives ruined in silence.
#ExposeMENow
@ITV
@C4Dispatches
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Patients mental health gets damaged, it may have already have been an issue - is it a surprise if they explore their feelings and act in less desirable ways? When they have been othered by society. Does this article help that or likely to make it worse? Well, look at the comments
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It didn’t take
@emmajames3
long to block me. Don’t bother to engage and learn, just put the shutters up, who cares about those who you harm? Maybe it’s not good for her mental health if lots of people get irate at her, that would be ironic?
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Glad to have been physically part of
@TheChronicColab
emergency campaign action today for severe ME patients who are given inappropriate and insufficient medical care including being starved. It has led to avoidable deaths and unfortunately probably will again.
#DontLetMEDie
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I did a simple Freedom of Information request to the NHS Blood and Transplant service as it is sometimes said that ME aka CFS patients can’t donate blood because of it’s specific organic biological nature. They inform me that it is to protect the donor from relapse (ie a crash).
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I’m very sorry to any of the patients who have been featured or mis/appropriated without their consent or those who gave interviews in good faith.
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I think the aspect of this article that I find so shocking is the sharing of photographs and social media handles of vulnerable patients who are being so harshly misrepresented. It’s next level vindictive.
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@livia_edin
@fesshole
It’s in the congregational seating area of the church on the first floor
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Is a stiff walking gait usual for house/bed bound ME patients?
No offence to the great man himself but I’m looking a bit like Ozzy Osborne when I shuffle about the place.
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@davidtuller1
It seems as though he is obfuscating the modus operandi that has been there from the early days. A patient testimony.
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Another flavour of Giselle Boxers mindset, there is one party here with the false beliefs and it isn’t ME patients.
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From AcuPips, the UKs original ear seed kit company. (I can’t qualify their claims of benefits from the products but can agree they don’t cure ME aka CFS).
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Myalgic Encephalomyelitis needs its own drama, this scandal has been going on for a century and picked up pace in the 1980’s. The Long Covid prognosis would be radically different if ME had been dealt with. 100,000’s lives ruined in silence.
#ExposeMENow
@louistheroux
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This is a review of one of the two ‘experts’ quoted in the article,
@DrMarkDSullivan
, apparently he disbelieved a patient and they died.
Too many times I’ve heard of cases of sepsis in chronically ill people being overlooked and it causing permanent harm if not death.
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Oliver’s video retort to AcuSeeds on Dragons Den has had 1.5million views now on Tik Tok, that’s great, well done O man.
I believe Dragons Den had 3 million viewers of the live broadcast.
Glad this isn’t going away and that we can use this to raise awareness for our cause.
1.4 million people now know you’re exploiting the chronically ill
@StevenBartlett
shame on you for giving a platform to a business that takes advantage of ME sufferers’ desperation for a cure
@BBCOne
#pwme
#mecfs
#DragonsDen
#acuseeds
@DeborahMeaden
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More defiant social media postings from Giselle Boxer of Acu Seeds. I see no concern about ME patients.
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@hopedoingdope
Reminds me of the Michael Jackson thing, she still thinks she’s a kid so therefore it’s appropriate but it isn’t appropriate because she’s an adult. Of course if anything sexual happened then that’s something different.
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@CoyneoftheRealm
That’s good to hear. Presumably Wessely and Sharpe are both very aware of your clinical experience which is ironic as they’re often touting clinical experience as proof of GET and CBT helping ME patients, perhaps they are cherry picking the expertise that suits cognitive bias.
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@NeleHelena
For me it goes beyond just a common misdiagnosis it’s borderline gas lighting, it’s taking away their autonomy, disregarding their sense of self, patronising and arrogant to the millionth degree that the doctor who hardly knows you thinks they know you better then you do yourself
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Well he was either searching for his name, ME awareness day/week/month or for Weasels. Which do you reckon?
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@RoadsideMum
@Chartwells_UK
It makes me think why they couldn’t have done this before? I don’t think chartwells being naieve was the reason? There are high profit margins on food and big business exists to make a profit so cost reduction is always a priority. Do we know how much they will profit from FSM?
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Has
@BBCDragonsDen
ever endorsed medical pseudo science before ear seeds? Or was it a historic moment with AcuSeeds?
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. . . even when things have resolved and the emotional stress/shock subsided it seems like the reduction in baseline remains.
I imagine trying to mitigate things as soon as possible will help but what do you do to for it?
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I'm hearing that doctor Strain of Action for ME was misquoted in the media about diet and exercise giving a better chance of recovery.
This is very concerning. Yes the comment from Miller is expected but Prof Strain of
@actionforme
suggests that changing diet and exercising gives a better chance of recovery.
This from a man charged to represent patients very ill with
#ME
so ill that some choose euthanasia 🤬
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@_ChloeGreen_
I was watching online. The anti-lockdown man was disgraceful, tone deaf, he appears at anti-lockdown events but this was not his place.
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The article is then published to a huge audience on the Daily Mail website who’s readership share their same cynical biases.
I really hope this isn’t the start of a new trend. We have seen bad faith takes by the psychiatric lobby and SMC before but even they didn’t do this?
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@IppokratisAnge1
How do they know EBV causes MS? If 90% of population has had EBV then it will be high in any group surely?
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@EfCovid19
@MayoClinic
One for the
@MayoClinic
- how badly do you think you are mistreating LC patients?:
A) badly
B) very badly
C) very very badly
D) very very very badly
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Giselle Boxer of Acu Seeds:
“I went to see my GP…they said you have Chronic Fatigue Syndrome, we don’t have a treatment, you will never recover, never work again and you’ll never have kids”.
Hard to believe a GP would say this in 2019 but anything’s possible
#ME
#dragonsden
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I find the BBC response to Dragons Den complaints disingenuous, patronising, thoughtless and obtuse, amongst other things.
It's a doubling down, there are no humble acknowledgements of the harm and distress caused.
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@mlothianmclean
Big blacksmithing ran ad campaigns in horse paddocks saying ‘are your road hoofs ready?’ which played on the insecurities of the community and thus the original Doctor Martens were popularised amongst Equines.
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I’m counting three news stories today covering backlash from Acu Seeds on Dragons Den and have pitched my own although have probably missed the boat, it’s not about me though. I really hope some good comes of it all.
ITV
Daily Mail
The Sun
Any others?
Any gone/going to print?
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Giselle Boxer of AcuSeeds, Instagram story 22.1.24.
The pressure is getting to her, as it would me, my suggestion would be to offer a full post explaining things in more detail, answering questions, addressing the Dragons Den show, press coverage and claims she has made online.
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'My daughter's ME was so severe it killed her - Dragons' Den ear seed scandal is a disgrace'
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@palashp40616755
@AskLyft
That’s awful. Sounds like the driver lied to you and on that basis probably has the cat or left it somewhere. If they were a decent human they would re-trace their journeys to find the cat, maybe with you in the car.
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It feels like not only does ME rob you of living a life but the times you do manage to do something the memories aren’t there, which is particularly sad when you have young family members rapidly growing up and a parent who is dying.
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@makeupartist524
I fear covid will never go away or become very minimal risk because of current and seemingly most likely on-going health policy, therefore if I take a stance to avoid situations with increased risk then many aspects of my life will always suffer as that risk will never go away.
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I have the email of a big wig at a tabloid newspaper (not the worst ones), thinking of pitching the Dragons Den AcuSeeds story, the angle being ‘BBC promoting pseudo science in historic 6 offer pitch, including to a vulnerable patient population’.
What do you think?
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@barneydrums
@Simon_Pegg
@CarryonTouring_
@TimmoWorldWide
@UK_Music
@WeAreTheMU
@KevinBrennanMP
@MusicWeek
@LiveMusic_UK
@HelpMusicians
@CommonsDCMS
@BBCNewsEnts
There was an offer of a reciprocal agreement for touring musicians between UK and EU but UK turned it down. Perhaps they were afraid that some of the musicians from the EU would want to stay here in the UK and not return home.
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It doesn’t help being easily susceptible to stress or not ‘emotionally resilient’, I think this is an ME thing but can maybe also happen with Neurodivergent people and those with EDS (or hyper mobility spectrum disorder?)
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@wildersreese
I am pretty sure that there is a trend of ‘journalists’, TV presenters, podcasters, influencers etc who knowingly put out unfair, aggravating and contentious content purely for increased engagement, so educating them probably won’t work. Angry people click more.
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Interestingly Sepsis (which often occurs in chronically ill people, including those who are undiagnosed or misdiagnosed) can cause Post Sepsis Syndrome which has psychological and emotional symptoms. Once again a mechanism of the bodies biology affecting the minds psychology.
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I asked for a referral to immunology for MCAS and this is what I got back.
“Allergists/ Immunologists/ Haematologists use the term mast cell activation syndrome to describe a syndrome of recurrent anaphylaxis with raised mast cell tryptase…
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Another ME patient has tested positive for micro clots and platelet activation.
Micrographs of my blood from this week, where you can see amyloid microclots (fibrinaloids) and platelet activation.
#MECFS
patient for almost 25 years, no clear onset, no known COVID19 infection and triple vaccinated (last jab in Jan).
#TeamClots
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@JDaviesPhD
That because my mood got worse when my symptoms were exacerbated that I didn’t have ADHD and that the symptoms were caused by depression. In reality I had ME, ADHD and Depression as a result, the low mood was caused by exacerbation of ME symptoms and not the other way around.
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@alexandrite113
I see friends getting on with their lives and progressing, it’s been several years since I became housebound, a lot has changed in 5 years, it feels like no time at all, but now people have aged and have kids, careers, houses etc
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It’s great for ME awareness that the Acu Seeds Dragons Den debacle is making it on to TV shows, (as long as it’s represented accurately).
Hopefully the next question in viewers minds is what are governments going to do about this ME illness with no cure?
#ME
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@JanetDafoe
I guess doctors mis-diagnose all the time but I don’t know if punitive damages are handed out nearly as much? Prosecuting the PACE authors for fraud on the other hand may be a potentially successful avenue?
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Doctors should never have said those things (assuming they did).
ME patients are more likely to recover from ME when they’re young and/or within the first year or two of illness.
Women absolutely can and do get pregnant whilst having ME, in fact some improve a lot as a result.
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@guardian
Same old nonsense, this article has been rewritten and republished constantly for decades, interesting that it is hardly if ever coming from patient groups/organisations rather from psychiatrists and the SMC who are affiliated with insurance co’s. I wonder why that is? . .
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@friswith_med
@richardwiegold
@C_Pley
@francesweetman
Since you’re not a senior academic. . . fancy a shag?
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I’m seeing that there are another two patients with severe ME in UK hospitals right now that are being denied the nutritional access they need to survive. Wholly inadequate and inhumane.
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@amy_is_tired
Seems like the nervous system goes in to fight/flight quite easily, maybe because it is already dysregulated?
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I was reading that IV Saline clears lactic acid so if you have POTS and High Lactic Acid then maybe worth a go if you can afford it?
#TheAcidTest
#ME
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@profmsharpe
That review has already been done though? The GRADE system is highly appropriate, scientific and the results match what ME & CFS patients report. Also don’t forget NICE are only allowed one delay which has already occurred.
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Dating apps have prompts to complete these days, one of them is ‘I’m still not over. . .’, ‘Glandular Fever’ was my answer. It’s funny and I’m not lying 🤷🏻♂️.
#ME
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@nataliesurely
Imagine Natalie, you had been made bedbound by GET, unable to tolerate light or sound, vulnerable defenseless, doctors seemingly ruling out any known causes, you might realise the inhumanity of what you have written about no evidence to say GET has caused harm. Luckily for you..
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ME also screws with my ability to grieve and process. I don't think brain fog and grief are necessarily the best bed fellows because grief is something that is needed to be worked through, it brings up all sorts of emotions good and bad, unfortunately my brain prefers the latter.
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Did the ME/CFS God take the saying ‘live every day as if it’s your last’ too seriously?
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@scotgovhealth
@jenni_minto
It doesn't feel like Scotland wants to do much about Long Covid, including understand it
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@debbie_seymour
I think one or two of the ME charities have support telephone lines which he could speak to, if he could be encouraged to do - get his frustrations out and be informed of what you’re going through (sometimes people need to hear it from someone else or in a different way).
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@Sandyboots2020
I do find masks uncomfortable but I do use them in hospital and public transport if not shops too.
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