Research: ME/CFS & PEM found in many with Long COVID

Posted on 12/22/2022 by wames

ME/CFS and Post-Exertional Malaise among patients with long COVID

 

Prof Leonard Jason and Joseph Dorri found 58% of 465 long COVID patients met the criteria for ME/CFS, confirming the findings of previous research.

 

Research abstract:

This study sought to ascertain the prevalence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) among a sample of 465 patients with Long COVID.

The participants completed three questionnaires:

  1. a new questionnaire measuring both the frequency and severity of 38 common symptoms of COVID and Long COVID,
  2. a validated short form questionnaire assessing ME/CFS, and
  3. a validated questionnaire measuring post-exertional malaise.

The population was predominantly white, female, and living in North America. The mean duration since the onset of COVID-19 symptoms was 70.5 weeks.

Among the 465 participants, 58% met a ME/CFS case definition.

Of respondents who reported that they had ME/CFS only 70.57% met criteria for ME/CFS and of those who did not report they had ME/CFS, 29.43% nevertheless did meet criteria for the disease: both over-diagnosis and under-diagnosis were evident on self-report.

“it is not sufficient to just ask patients whether or not they have ME/CFS, as most have no idea of what symptoms are in the established ME/CFS case definitions”

This study supports prior findings that ME/CFS occurs with high prevalence among those who have persistent COVID-19 symptoms.

Excerpt from Discussion:

Those COVID-19 patients who meet ME/CFS criteria were more symptomatic on all COVID-19 symptoms. It is a tautology to show that ME/CFS symptoms were more common in people diagnosed with ME/CFS, but more importantly, it is interesting that some Long COVID symptoms (e.g., loss of or change in smell and/or taste) also were more frequent and severe in people who met diagnostic criteria for ME/CFS.

ME/CFS and Post-Exertional Malaise among Patients with Long COVID, by Leonard A Jason, Joseph A Dorri in Neurology International Vol 15, #1, pp 1-11, 20 December 2022 [10.3390/neurolint15010001 ]

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Research: Brain fog is similar in Long COVID & ME/CFS

Posted on 12/21/2022 by wames

Brain fog of post-COVID-19 condition and ME/CFS, same medical disorder?

 

Spanish researchers studied cognitive impairment in people with post-COVID syndrome and ME/CFS. They found similar symptoms and cognitive impairment in both groups, with greater physical and neuropsychiatric problems in ME/CFS. They also suggest a prolonged decreased sense of smell is a possible marker of cognitive deterioration in patients with post-COVID-19.

Research abstract:

Background:

Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is characterized by persistent physical and mental fatigue.

The post-COVID-19 condition patients refer physical fatigue and cognitive impairment sequelae. Given the similarity between both conditions, could it be the same pathology with a different precipitating factor?

Objective:

To describe the cognitive impairment, neuropsychiatric symptoms, and general symptomatology in both groups, to find out if it is the same pathology. As well as verify if the affectation of smell is related to cognitive deterioration in patients with post-COVID-19 condition.

Methods:

The sample included 42 ME/CFS and 73 post-COVID-19 condition patients. Fatigue, sleep quality, anxiety and depressive symptoms, the frequency and severity of different symptoms, olfactory function and a wide range of cognitive domains were evaluated.

Results:

Both syndromes are characterized by excessive physical fatigue, sleep problems and myalgia. Sustained attention and processing speed were impaired in 83.3% and 52.4% of ME/CFS patients while in post-COVID-19 condition were impaired in 56.2% and 41.4% of patients, respectively.

Statistically significant differences were found in sustained attention and visuospatial ability, being the ME/CFS group who presented the worst performance.

Physical problems and mood issues were the main variables correlating with cognitive performance in post-COVID-19 patients, while in ME/CFS it was anxiety symptoms and physical fatigue.

Conclusions:

The symptomatology and cognitive patterns were similar in both groups, with greater impairment in ME/CFS. This disease is characterized by greater physical and neuropsychiatric problems compared to post-COVID-19 condition.

Likewise, we also propose the relevance of prolonged hyposmia as a possible marker of cognitive deterioration in patients with post-COVID-19.

Brain fog of post-COVID-19 condition and Chronic Fatigue Syndrome, same medical disorder?, by N Azcue, J C Gómez-Esteban, M Acera, B Tijero, T Fernandez, N Ayo-Mentxakatorre, T Pérez-Concha, A Murueta-Goyena, J V Lafuente, Á Prada, A López de Munain, G Ruiz-Irastorza, L Ribacoba, I Gabilondo, R Del Pino in J Transl Med. 2022 Dec 6;20(1):569 [doi: 10.1186/s12967-022-03764-2]

 

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NICE guideline implementation in Wales update

Posted on 12/20/2022 by wames

Is NHS Wales implementing the NICE guideline?

 

WAMES has been asking Health Boards in Wales during 2022  how they are implementing the 2021 ME/CFS NICE guideline. Although progress is excruciatingly slow, there are signs that some are making changes.

Hywel Dda and Betsi Cadwaladr Health Boards

Both are planning how to launch a stakeholder engagement on their implementation plans in 2023.

Cardiff & Vale Health Board

CVUHB has been holding a long-term conditions co-production exercise during 2021 which WAMES and members of MESiG have been part of. The Health Board is now planning a Pathway Implementation group, with WAMES as a stakeholder during 2023.

Aneurin Bevan Health Board

ABUHB is yet to report back on their autumn plans for setting up a Pathway implementation group and how they intend to consult patients.

Cwm Taf Health Board

CTUHB say they have made staff aware of the guideline but have not yet reported any further developments.

Swansea Bay Health Board

SBUHB say they have updated their ME/CFS clinical pathway, have a training programme for GPs and include people with ME/CFS in rheumatology services. WAMES continues to try to get more details about this service and encourage some patient engagement.

Powys Health Board

PtHB say they have updated their ME/CFS pathway. They consult existing service users about their plans, not those who have been disillusioned by their past use of graded exercise and CBT approaches). WAMES is continuing to try to find out more about the improvements they have made and how patients can be heard.

Welsh Government 

During 2021 WAMES has been informing the ME/CFS lead (also the neuro and Long COVID lead) about the issues. She has been very interested and concerned. Hopefully 2023 will be the year of action!

Can you help?

In order to represent people with ME/CFS we need to hear about your recent experiences with the NHS in your area.

  • Is your GP aware of the revised NICE guideline?
  • Have you asked for a formal diagnosis?
  • Do staff appear to understand PEM – the post exertional symptom exacerbation response?
  • Do they know where to refer you within the Health Board?
  • Have you been offered any of the Long COVID support sessions?

Contact jan@wames.org.uk

 

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Christmas greetings & opening hours

Posted on 12/20/2022 by wames

Seasons greetings from all at WAMES

 

WAMES is run by volunteers, many of whom have ME or care for us. We  will be taking some time off over the festive period so we can start the new year refreshed (hopefully!).

WAMES helpline hours

helpline@wames.org.uk
0290 2051 5061

Closed: 23 December – 2 January
Reopen: 3rd January
Feel free to email queries and we will reply as soon as possible.

Alternative sources of help

The Samaritans can be contacted for emotional support 24 hours a day, 7 days a week.

English – 116 123 – free number (24 hours a day, 7 days a week)
Cymraeg – 0808 164 0123 – free number (7pm-11pm – check times on the website)

Meic Cymru – Children and young people up to age 25 can also contact Meic by phone, email, SMS text and instant messaging.

8am to midnight, 7 days a week
FREEPHONE: 0808 802 3456
SMS TEXT: 84001
IM/Webchat: www.meic.cymru.org

CALM – Campaign against living miserably – 365 days a year

Helpline 5am to midnight
Freephone: 0800585858
Webchat: www.thecalmzone.net/
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#WAMES_800 Fundraising Journey – half way to our target

Posted on 12/20/2022 by wames

#WAMES_800  4th target reached

 

Great news – the £400 milestone has been reached and we are half way to reaching our £800 fundraising target. A big thank you to someone who made us their Christmas gift this year!

The more we raise, the longer we can keep speaking out for the 3,600+ families hit by ME/CFS in Wales

£400 is a lot still to raise before bills start pouring in during March / April, but small donations from lots of people and free money from online shopping can help us stay afloat as long as we need to.

Find out more about our Fundraising Journey:

#WAMES_800 fundraising journey – Join us! 

How to get free donations for WAMES – online shopping

#WAMES_800 Fundraising volunteers needed! 

#WAMES_800 – How can I donate?

#WAMES_800 Fundraising – donate with PayPal & eBAY

#WAMES_800 – Donations ‘In lieu of gifts’

Send a Christmas e-card & donate to WAMES

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European Commission funding opportunities for ME/CFS

Posted on 12/15/2022 by wames

EC invites ME/CFS researchers to compete for grants

 

The European ME Coalition reports:

“More than 2 years after the adoption of the ME/CFS resolution, the European Commission has finally taken an initiative to support research on ME/CFS.

The Horizon Europe work program 2023-2024 includes a call on “tackling high-burden for patients, under-researched medical conditions.”

This call gives ME/CFS researchers improved opportunities to compete for a big European grant but no funding on ME/CFS has been ensured yet.

This article provides an overview of what has been decided by the Commission and which steps still need to be taken to get tangible results for ME/CFS patients…

The call has a total budget of €25 million. It aims to fund 4 projects that will receive 6 to 7 million euros each… If ME/CFS researchers could successfully submit a project, this call can give a significant boost to research on ME/CFS in Europe.

The funding amount, however, will likely be split among multiple collaborators. An application requires researchers from minimally 3 different EU countries and many European grants include even larger consortia. Researchers from the UK and the US can join in to become partners and receive funding under this call.    Find out more

ME Research UK: New EU Horizon for ME/CFS Research?

The EU’s initiative opens the door to increased funding for ME/CFS research but the monies on offer are not ring-fenced and so ME/CFS research applications will need to compete with diseases equally deserving of research.

There is no guarantee that ME/CFS research will be funded at all despite the calls of the EU Parliament in their Resolution. Progress has been made but outcomes are awaited.

 

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Research: Investigating undergraduate medical education on ME/CFS

Posted on 12/15/2022 by wames

Investigating undergraduate medical education on myalgic encephalomyelitis/ chronic fatigue syndrome

 

Cardiff University medical student Victoria Alice Reid & Dr Nina Muirhead surveyed 94 students from more than 16 medical schools across the UK. 35% of the students did not know what ME/CFS was and 88% said that the disease had not been covered in their course so far. 89% of participants wished to learn more about ME/CFS, specifically through e-learning and videos.

“ME/CFS is not just yet another disease to add to overburdened curricula, it is unique in that there is a worsening of repeat cardiovascular exercise physiology, and exacerbation of disease symptoms on exertion. Patients with ME/CFS are an exception because the usual advice to exercise could cause harm.”

Research abstract:

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 UK medical students.

Methods:

An online survey developed using Redcap was distributed to participants who were recruited via social media or via medical societies’ emails. The participants were undergraduate UK medical students.

Results:

94 students completed the survey from more than 16 medical schools. 35% of the students did not know what ME/CFS is and 88% say that the disease has not been covered in their course so far. 89% of participants would like to learn more about ME/CFS, specifically through e-learning and videos.

Discussion:

Participants were generally unaware of ME/CFS and its symptoms and had not received relevant teaching or exposure to the disease. Education on ME/CFS within undergraduate UK medical schools is currently inadequate and the interest expressed by students in this survey demonstrates a new teaching opportunity for UK medical schools.

“The Covid pandemic raised awareness of Long Covid and ME/ CFS at the time of the survey, which may have made students more interested in participating.”

in The British Student Doctor Vol 6 No.1 2022, Published 1 Dec 2022

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WAMES Fundraising – donate with PayPal & eBAY

Posted on 12/09/2022 by wames

When shopping – pay by PayPal, Donate to WAMES

 

Do you shop on eBay or pay by PayPal?

Why not name WAMES as your favourite charity, so whenever you shop you can give a donation to the PayPal Giving Fund and help us along on our  fundraising journey. Just add your preferences in your PayPal account details.       How PayPal works

Just donate without shopping

You can also transfer money through the PayPal app.

Are you a seller?

Sellers can also support us by donating a percentage of their sales.

Gift Aid

Donors can opt into Gift Aid by simply ticking a box. This declaration is then automatically applied to all future donations to your charity. PayPal doesn’t charge for this service!

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Send a Christmas e-card & donate to WAMES

Posted on 12/09/2022 by wames

Send an e-card this Christmas

 

There are many reasons to replace paper greetings cards with e-cards:

  • it takes less energy for people with ME and carers
  • it side-steps some disruptions i.e. train and Royal Mail strikes
  • it reduces our carbon footprint
  • it can be cheaper – a 2nd class stamp is how much? 68p!

Don’t send me a card!

WAMES is now on the #DontSendMeACard platform, and we invite you to send as many e-cards as you want via email or WhatsApp for a donation that you can afford. We have a growing selection of images (some animated) for you to choose from.  How it works

Personalise your card

You can create one eCard to share to everyone or personalise each one, it’s up to you. You can upload a photo to accompany your personal message inside each eCard. You can also opt to show how much you donated to WAMES, in lieu of your card (and maybe even a gift).

Take your time

With each donation, you are assigned a volume of up to 100 eCards to use. You can come back later to send more. You can view your shares in your account and track your carbon savings.

Have you designed a card of your own?

Why not send it to us and we can upload it for you and others to use.

Send us square images 1200×1200 pixels in jpg or animated gifs. Max file size is 1mb.

There’s still a place…

Of course, not everybody can be online, and paper cards are the right choice for some situations. A number of people with ME make beautifully crafted cards, often as a fundraising tool, so it is worth hunting them out and being prepared for anything! Let us know what you find…

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#WAMES_800 Fundraising Journey – 3rd £100 target reached

Posted on 12/09/2022 by wames

#WAMES_800 Fundraising Journey climbs another step towards our goal

 

We have climbed another step towards reaching our target of £800 to fund next year’s WAMES activities.

The £300 milestone has been reached, but still £500 to go. We need to pick up the pace!

Every little helps

The third milestone has been reached by the sale of hand-made cards and donations from online shopping. Each shop might raise anything from 25p for a weekly supermarket shop to £5+ a time on a big purchase, but it all adds up. Many thanks to all who have joined us on our fundraising journey. Why not invite others to join us!

 

Find out more about our Fundraising Journey:

#WAMES_800 fundraising journey – Join us! 

How to get free donations for WAMES – online shopping

#WAMES_800 Fundraising volunteers needed! 

#WAMES_800 – How can I donate

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