Stripy Lightbulb CIC

2022: Year in Review | Stripy Lightbulb CIC

Latest post -

'2022 - Year in Review'

https://www.stripylightbulb.com/2022/12/22/2022-year-in-review/

2022: Year in Review | Stripy Lightbulb CIC As our working year draws to a close, we have been reflecting on our achievements of 2022 and look ahead to hopefully brighter times in 2023. We started the year by warning exercise professionals about Post Exertional Malaise in M.E/C.F.S and Long COVID, as we discussed in the related blog post, thi...

New long COVID rehab programme could unlock the key to treatment

Please, please do not take part in this type of research if you have PEM.

Learn from M.E.

'the levels increase in intensity until the fifth, which involved activities the patients took part in before becoming ill, such as regular exercise or sports.

There have been 6 articles published today about this one research study.

PEM is the reason increasing activity is contraindicated for /

This research article will add stigma to already heavily stigmatised patient groups.

Patients haven't 'recovered' - we would suggest following up with all participants 6 weeks later to see deterioration.

https://www.euronews.com/next/2022/12/19/new-long-covid-rehab-programme-gives-treatment-hope-to-millions-of-sufferers

New long COVID rehab programme could unlock the key to treatment The programme is based on a gradual increase in physical activity.

Long COVID: New study focusing on paced increase in physical activity sees 'impressive results'

This is rebranded Graded Exercise Therapy.

Half of Long Covid patients meet the diagnostic criteria for M.E/C.F.S.

GRADED EXERCISE THERAPY HARMS SOME PEOPLE WITH
M.E/C.F S (due to Post Exertional Malaise) AND IS NO LONGER RECOMMENDED BY NICE - National Institute for Health and Care Excellence.

How did this pass an ethics review?

We hope these research participants were followed up 6 weeks later. That is when deterioration will be detected.

Also- PACING DOES NOT MEAN ANY KIND OF INCREASE IN ACTIVITY. It's learning what you CAN do within your own available energy.

https://lnkd.in/ekjSD9Tj

Long COVID: New study focusing on paced increase in physical activity sees 'impressive results' A new study has found "impressive results" with its long COVID programme, which was based on a "gradual or paced increase" in a patient's physical activity.

www.cas.mhra.gov.uk

M.E/C.F.S is still not on this list 👇 despite the efforts of ourselves and other M.E/CFS organisations.

So if a patient is symptomatic they may not be part of routine testing, therefore may not become eligible for early antiviral intervention, so treatment would be initiated only on admission to hospital.

https://www.cas.mhra.gov.uk/ViewandAcknowledgment/ViewAttachment.aspx?Attachment_id=104093 - Updated Nov 2022

www.cas.mhra.gov.uk

Olivia on Twitter

We have now helped two UK NHS trusts with their Long Covid and chronic illness website content.

'Goal setting' and positive mindset narratives - be gone.

They lead to patient blaming and do not lead to recovery (MEcfs subset of Long Covid).



https://twitter.com/thepollenberry/status/1602995771103744003?t=jEJG9iTnWN3YwIolzbtijQ&s=19

Olivia on Twitter “This is on my GP’s website. 2.5 years of self managing deteriorating health with brutal symptoms leaving me bedbound, feeling completely abandoned medically. I should be journaling, have gratitude, shift my thinking and using my strengths to make me happier. It’ll cure us all!”

Weds 21st December is our last working day before Christmas.

However... sign up to our online training is fully automated and available 24/7 all year round to anyone who has access to the internet and a method to pay online!

Sign up!

We can't wait to deliver our COVID19 'safe' (as much as it can be), face to face training day in on 26th April 2023!

All thanks to a £6000 grant from the
The National Lottery Community Fund/ Cronfa Gymunedol y Loteri Genedlaethol 🙏

The free event is open to residents of who have a duty of care over patients.

Solve ME/CFS Initiative on Twitter

Fantastic!!

We have had to pass on a similar, though much smaller, opportunity recently.

We are a very small CIC and are already running a number of projects.

Disappointing to not be able to include M.E/C.F.S in research initiatives locally.



https://twitter.com/PlzSolveCFS/status/1602687445912489984?t=oCJMMbL0kunmnE6zEVUpgw&s=19

Solve ME/CFS Initiative on Twitter “We are excited to share that Solve M.E. was awarded a grant from to support patient engagement in research, bridging disease disparities, research, & patient needs. This program will build on decades of patient support & advocacy with the community.”

We are enjoying working with Cardiff and Vale Health Board on the 'living well with chronic illnesses' initiative.

The work is proactive and everyone involved wants to create something effective and long-lasting.

Thanks for letting us be part of it!

Why Is M.E/C.F.S Excluded From the Official COVID19 Narrative in the UK? | Stripy Lightbulb CIC

'Why is M.E/C.F.S Excluded From the Long COVID Narrative in the ?

https://stripylightbulb.com/2022/12/05/why-is-m-e-c-f-s-excluded-from-the-official-covid19-narrative-in-the-uk/

Why Is M.E/C.F.S Excluded From the Official COVID19 Narrative in the UK? | Stripy Lightbulb CIC For the past 11 months, Stripy Lightbulb CIC has been working to get M.E/C.F.S included within the official COVID19 narrative in the UK. It is now December 2022 and yet the UK Government has still not acknowledged that COVID19 has triggered many thousands of cases of M.E/C.F.S. We have been working....

Our work continues.

Second time we have asked due to the shifts within Govt.

https://www.stripylightbulb.com/2022/01/05/human-rights-abuses-of-m-e-c-f-s-patients-our-work-so-far/

NEW FOR 2023!

We have received funding to hold a face-to-face training day on M.E/C.F.S in Cardiff.

If you are based in Wales, this is the perfect opportunity to learn about M.E/C.F.S and create a better understanding around appropriate support and care needs.

Don't forget!

Due to the , our online training courses on are currently 'Pay what you can afford'.

The CoLC does not diminish the need for healthcare/education professionals and employers to learn about this poorly understood disease.

COVID19 has increased the need significantly.

HALF of Long COVID cases meet the diagnostic criteria for M.E/C.F.S.

Sign up today!

Investigating undergraduate medical education on myalgic encephalomyelitis/chronic fatigue syndrome

It seems our training day can't come soon enough.

Cardiff - 26th April 2023.

https://thebsdj.cardiffuniversitypress.org/articles/308

Investigating undergraduate medical education on myalgic encephalomyelitis/chronic fatigue syndrome Background and Objectives: ME/CFS is a poorly understood, highly stigmatised condition which significantly reduces patients’ quality of life. ME/CFS had been identified as a gap in many health professionals’ knowledge, therefore this research aims to explore the understanding of ME/CFS amongst U...

We are proud to be a member of a range of different UK organisations and groups that work for disabled people, support social enterprises, and tackle health inequalities.

These include National Voices, the Disability Benefits Consortium, and Social Enterprise UK.

Why Is M.E/C.F.S Excluded From the Official COVID19 Narrative in the UK? | Stripy Lightbulb CIC

Another email has just been sent to the Department of Health and Social Care,

It needs to be acknowledged that M.E/C.F.S is a known outcome of .

https://www.stripylightbulb.com/2022/12/05/why-is-m-e-c-f-s-excluded-from-the-official-covid19-narrative-in-the-uk/

Why Is M.E/C.F.S Excluded From the Official COVID19 Narrative in the UK? | Stripy Lightbulb CIC For the past 11 months, Stripy Lightbulb CIC has been working to get M.E/C.F.S included within the official COVID19 narrative in the UK. It is now December 2022 and yet the UK Government has still not acknowledged that COVID19 has triggered many thousands of cases of M.E/C.F.S. We have been working....

Half of Long Covid cases meet the diagnostic criteria for M.E/C.F.S.

We are often asked if our training is Long COVID relevant.

Yes, it is.

Many cases of M.E/C.F.S are caught up under the umbrella term 'Long COVID'

Learn about M.E/C.F.S from a M.E/C.F.S online training provider.

Sign up today!

Why Is M.E/C.F.S Excluded From the Official COVID19 Narrative in the UK? | Stripy Lightbulb CIC

Work in progress.

'Why Is M.E/C.F.S Excluded From the Official Narrative in the UK?'

Includes FOI request info.

https://www.stripylightbulb.com/2022/12/05/why-is-m-e-c-f-s-excluded-from-the-official-covid19-narrative-in-the-uk/

Why Is M.E/C.F.S Excluded From the Official COVID19 Narrative in the UK? | Stripy Lightbulb CIC For the past 11 months, Stripy Lightbulb CIC has been working to get M.E/C.F.S included within the official COVID19 narrative in the UK. It is now December 2022 and yet the UK Government has still not acknowledged that COVID19 has triggered many thousands of cases of M.E/C.F.S. We have been working....

Novel brain imaging study seeks answers to chronic fatigue mystery

Novel brain imaging study seeks answers to chronic fatigue mystery - Medical Xpress - https://goo.gl/alerts/T4BmmC

Novel brain imaging study seeks answers to chronic fatigue mystery Vibrant, bubbly and full of energy, 24-year-old occupational rehabilitation consultant Nadia was living her best life. Then the fatigue took hold.

Good Law Project on Twitter

We'll be keeping an eye on this trial.

If this standard of is found to break the law it could be applied to care received by people living with M.E/C.F.S who often wait years for diagnosis and may not have access to referral pathways.



https://twitter.com/GoodLawProject/status/1597936948521361410?t=spsnhJ_yYgP9LfmD1xAFfw&s=19

Good Law Project on Twitter “Wait times for trans healthcare on the NHS is measured in years, not months. This isn’t acceptable, it breaks the law – and it’s costing lives. 🏳️‍⚧️ Watch our video with , & on our case in Court this week:”

Human Rights Abuses of M.E/C.F.S Patients – Our Work So Far | Stripy Lightbulb CIC

Another day, another email sent.

Our work on the of M.E/C.F.S patients continues - Blog written in January 2022.

https://stripylightbulb.com/2022/01/05/human-rights-abuses-of-m-e-c-f-s-patients-our-work-so-far/

Human Rights Abuses of M.E/C.F.S Patients – Our Work So Far | Stripy Lightbulb CIC Our vision is to improve the quality of life of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients. How do we do this? The experience of having the disease is bad enough but patients also have to deal with poor 'treatment' and support from those who have a duty of care over them. We are imp...

Can Neuroplasticity Ease Long COVID Symptoms?

In a word: NO.

This article also mentions that exercise helps - also wrong (with the main subset of LC)

https://theepochtimes.com/health/can-neuroplasticity-ease-long-covid-symptoms_4866140.html?utm_campaign=socialshare_twitter&utm_source=twitter.com

Can Neuroplasticity Ease Long COVID Symptoms? No matter how old we get, our brain can always learn new things and adapt to new situations thanks to the neuron-linking capacity created by neuroplasticity.

Updating ALL NHS webpages with accurate information on M.E/C.F.S is something we have been working on for months.

We have just received an email from the specific department that deals with this (after being passed around various digital depts) and have been asked to explain what is wrong with their content.

We will be emailing them with specifics AGAIN.

How many mistakes can YOU spot on the 'Chronic Fatigue Syndrome' section below.

The title is the first one!

We can't wait to deliver our COVID19 'safe' (as much as it can be), face to face training day in in Spring/Summer 2023!

All thanks to a £6000 grant from the
The National Lottery Community Fund/ Cronfa Gymunedol y Loteri Genedlaethol
🙏

The free event is open to residents of who have a duty of care over patients ie. Healthcare and education professionals and employers. We are also inviting members of the Senedd to attend.

We are becoming increasingly concerned about anecdotal evidence that parents of children with are now being inappropriately reported to .

This is an issue that has haunted the M.E/C.F.S community for many years.

We strongly believe this is due to the very poor knowledgebase on this type of complex disease.

Many children with Long COVID meet the criteria for M.E/C.F.S.

Learn about M.E/C.F.S to prevent a raft of inappropriate child protection proceedings.

👉 stripylightbulb.com (Education course is most appropriate for social workers)

Stripy Lightbulb CIC proudly support National Voices, and 62 other organisations, in a letter to Jeremy Hunt highlighting the impact of the on people living with ill health and disability ✉

👉 bit.ly/3g62Ep1

It's that time of year again.

Time to submit accounts and evaluate our .

A part of this are the evaluation forms which our learners voluntarily fill in after completing the courses. 45% of our learners completed the forms.

Course evaluation form results from 2021-22 (1 Oct-30 Sept). Each question had 5 possible responses.

How likely is it that you would recommend our e-training to a friend or colleague?
Extremely likely - 50%
Very likely - 25%
Somewhat likely - 25%

How relevant is this material to your role?
Extremely relevant - 75%
Very relevant - 25%

How clear was the presentation of the information?
Extremely clear - 25%
Very clear - 50%
Somewhat clear - 25%

How do you feel about the amount of information presented?
About the right amount - 75%
Somewhat too little - 25%

(Contrary to the 25%, we've received comments from non-learners saying 3 hrs for a course on M.E/C.F.S is too much.)

How engaging was the course content?
Extremely engaging - 25%
Very engaging - 50%
Somewhat engaging - 25%

How would you rate Stripy Lightbulb CIC's knowledge on the subject?
Excellent - 50%
Very good 50%

How clear are you on the takeaways?
Extremely clear - 50%
Very clear - 50%

(Fabulous! 'Takeaways' = what M.E/C.F.S is, how patients are affected, and how to support them within YOUR working environment.)

Which topics or aspects of the course did you find most interesting or useful? Freeform responses -
-policy and guidelines
-I found it all interesting as I had no real understanding
-All interesting
-Context of the condition

Do you have any other comments, concerns, or questions?
- I feel I will now have a better understanding on how to support my patients
-Information re potential links with Long Covid would be useful.

Re. the comment about more information about Long COVID being useful -

Please consider that we are a training company that only uses facts and evidence-based content about M.E/C.F.S. The science simply isn't there yet, we have been very limited about what we have been able to state as fact about M.E/C.F.S and Long COVID overlaps.

We have now updated our training to include that 6+ research studies have now stated that around half of LC meet the M.E/C.F.S criteria and have referenced the research papers. But that is as far as we can go, for now.

We are really happy with these results!

Three quarters of UK long COVID sufferers working less -survey

'LONDON, Nov 9 (Reuters) - More than three quarters of British people who have suffered persistent ill health following a COVID-19 infection have had to cut back or change the work they do, according to a survey on the impact of long COVID published on Wednesday.'

This is a problem that will only get worse. If the pattern of Long COVID continues, the many thousands of 'newly sick' (1 to 12m) who are struggling to do 'business as normal' will end up pushing themselves too hard and will make their symptom severity worse, causing them to drop out of employment altogether. **HINT** That's why Stripy Lightbulb CIC has training for . Half of Long COVID cases meet the diagnostic criteria for M.E/C.F.S.

That's a lot of skilled working age people.

We are also currently creating a generation of sick youngsters too. Doesn't bode well for the employment market of 10-15 years' time.

https://lnkd.in/ekEwJKbf

Three quarters of UK long COVID sufferers working less -survey More than three quarters of British people who have suffered persistent ill health following a COVID-19 infection have had to cut back or change the work they do, according to a survey on the impact of long COVID published on Wednesday.

Why would you do our training?

We would say - Why wouldn't you learn about a very poorly understood disease that is surrounded by stigma?

Education smashes the stigma and leads to better/more appropriate care for people living with .

Our training courses on ME/CFS include resources from around the world, not only to highlight that it is a global crisis, but also to give a balanced view.

Getting more pieces of the puzzle into place.

6 FOI requests sent this morning.

M.E/C.F.S should not be excluded from the official Long COVID narrative.

Written questions and answers - Written questions, answers and statements - UK Parliament

NICE may keep and as two separate conditions but in the real world Long COVID patients have been getting diagnoses of ME/CFS for 18m +

See parliamentary question from Vicky Foxcroft

- https://questions-statements.parliament.uk/written-questions/detail/2022-10-24/69712

Comment below if you are one of these people - be seen. Thank you.

Written questions and answers - Written questions, answers and statements - UK Parliament Information from UK Parliament on written questions & answers, written statements and daily reports.

Dormant assets and Social Enterprise Day 2022

I've emailed our local MP Stephen Morgan MP to ask them to show their support for local social enterprises this .

Dormant assets and Social Enterprise Day 2022 From joining us as a member to using your own spending power to support social enterprises, find out how you can join the social enterprise movement.

Written questions and answers - Written questions, answers and statements - UK Parliament

Question asked by Vicky Foxcroft of the Department of Health and Social Care in the UK on 10th Oct 2022.

'To ask the Secretary of State for Health and Social Care, whether her Department has made an assessment of the implications for its policies of the findings of Twomey et al published in Physical Therapy and Rehabilitation Journal volume on 13 January 2022 concerning chronic fatigue and postexertional malaise in people living with long covid.'

This research study states '58.7% met the PEM scoring thresholds used in people living with myalgic encephalomyelitis/chronic fatigue'.

syndrome' https://academic.oup.com/ptj/article/102/4/pzac005/6506311?login=false

DHSC (Will Quince MP) answered -

20 October 2022

'No specific assessment has been made.'
https://questions-statements.parliament.uk/written-questions/detail/2022-10-10/59022

We would ask why not?

There are now at least 7 international research studies stating that around half of Long COVID cases meet the diagnostic criteria for Myalgic Encephalomyelitis yet the DHSC has yet to acknowledge this.

Again, why not?

This issue relates to over one million people in the UK.

Inclusion in the narrative matters.

Our work continues.

Thank you Ms Foxcroft for your support, we will be in touch again!

'

Written questions and answers - Written questions, answers and statements - UK Parliament Information from UK Parliament on written questions & answers, written statements and daily reports.

What does Stripy Lightbulb CIC 'do'?

We are in the third sector and work for the benefit of the patient community.

Instead of solely relying on grants and donations, we sell CPD accredited online training courses to professionals about M.E/C.F.S.

Patients benefit in two ways -

1. Professionals get educated and are able to more adequately and appropriately support patients under their duty of care.

2. 50% of our surplus (profit) is given to UK ME CFS Biobank
for M.E/C.F.S biomedical research.

Buy our courses - help to bring about .

Sign up today!

Stuff of nightmares 👻

Article from 2015 - However, very little has changed in the mindset of professionals. Despite copious amounts of medical research proving it is a biological disease.

Scream louder if you want the neglect of to end NOW!

Long Covid, M.E/C.F.S, and Exercise Professionals | Stripy Lightbulb CIC

Repost x 2 about M.E/C.F.S and Exercise.

https://www.stripylightbulb.com/2022/01/08/fao-exercise-professionals-when-overload-principle-can-be-harmful/

https://www.stripylightbulb.com/2021/12/14/long-covid-m-e-c-f-s-and-exercise-professionals/

Long Covid, M.E/C.F.S, and Exercise Professionals | Stripy Lightbulb CIC This blog post is a transcript of this podcast Sally Hello, welcome to Lightbulb Moments. Today I'm talking to Stripy Lightbulb CIC Director Chantelle Martin. In her day job, Chantelle is an Occupational Therapist, but she has studied for an Exercise and Sports Science degree. She has also taken add...