United Kingdom: ME Association news

Lidia Thompson said:
I think Charles Shepherd is wonderful.

I don't know how he has managed to keep going during the bleakest years in the UK regarding ME/CFS. Seriously. He has put up with so much shit. He's been patronised by medics for years, who themselves got it totally wrong.
The man deserves a medal!

Much as I appreciate him ...
... I really do get annoyed by how ME/CFS comes across when he describes it. He makes it sound like it's some Noddy illness, with a bit of fatigue and the odd ache and pain.
Even his description of GET for ME/CFS in this video, does not reflect just how much harm and in some cases, permanent deterioration, GET has caused.

Also, in this video at least, he makes it sound as though Long Covid is far more serious. There's the Noddy ME/CFS side of it (a bit of fatigue and the odd ache and pain) and then there's the serious side = goes in to a long explanation of post Covid research including known diseases that can result from a Covid infection.

Does anybody else feel this way?

Is Long Covid more serious?
I thought a recent paper from Leonard Jason et al showed that the ME/CFS cohort were actually more severely disabled later down the line.

... or am I missing something?

Apart from that (!!), I think this is a good presentation, directed at the laymen.
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I haven’t watched this video. But from all the others that I have watched, I do share your admiration and frustration. CS does seem to be describing the mildest possible manifestation of M.E. but without also describing that even mild M.E. will wipe you out if you try to move even a little way beyond its constraints.

I am imagining it like this because when I go to the dr and they sit in front of me sneering and when they cut off all my sentences, I start to speak in a monotone and everything I say sounds trivial even to me because I’m gradually disconnecting from my own experience and focusing down on survival and self-defence. It’s human instinct not to increase one’s vulnerability whilst under attack. Self-preservation.
 
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Lidia Thompson said:
I think Charles Shepherd is wonderful.

I don't know how he has managed to keep going during the bleakest years in the UK regarding ME/CFS. Seriously. He has put up with so much shit. He's been patronised by medics for years, who themselves got it totally wrong.
The man deserves a medal!

Much as I appreciate him ...
... I really do get annoyed by how ME/CFS comes across when he describes it. He makes it sound like it's some Noddy illness, with a bit of fatigue and the odd ache and pain.
Even his description of GET for ME/CFS in this video, does not reflect just how much harm and in some cases, permanent deterioration, GET has caused.

Also, in this video at least, he makes it sound as though Long Covid is far more serious. There's the Noddy ME/CFS side of it (a bit of fatigue and the odd ache and pain) and then there's the serious side = goes in to a long explanation of post Covid research including known diseases that can result from a Covid infection.

Does anybody else feel this way?

Is Long Covid more serious?
I thought a recent paper from Leonard Jason et al showed that the ME/CFS cohort were actually more severely disabled later down the line.

... or am I missing something?

Apart from that (!!), I think this is a good presentation, directed at the laymen.
Click to expand...

ps

I believe long COVID is more deadly than M.E. as in it regularly kills people with little warning. Where as with M.E it’s more often medical denial of basic life saving care or that standard investigations were refused and then it’s too late. However because LC and ME fatalities are hard to prove not counted properly its hard to be sure about that. Just following the individual outcomes. But medical providers are not testing LC people for organ damage because of lack of capacity and consequent denial. Since people with ME including me get, acute COVID and develop LC we aren’t a separate and better off population.
 
Ash said:
I am imagining it like this because when I go to the dr and the sit in front of me sneering and when they cut off all my sentences. I start to speak in a monotone and everything I say sounds trivial even to me because I’m gradually disconnecting from my own experience and focusing down on survival and self-defence. It’s human instinct not to increase one’s vulnerability whilst under attack. Self-preservation.
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Wow, that's the perfect description of what happens to me, even during my 1ast GP home visit where I cou1d bare1y breathe even 1ying down in bed, propped up just enough to be ab1e to speak in partia1 sentences. Every attempt I made to exp1ain something was cut off by her.

I have emai1ed since then stating I wasn't ab1e to convey my symptoms accurate1y and wi11 be putting these in a 1etter.
 
Simbindi said:
Wow, that's the perfect description of what happens to me, even during my 1ast GP home visit where I cou1d bare1y breathe even 1ying down in bed, propped up just enough to be ab1e to speak in partia1 sentences. Every attempt I made to exp1ain something was cut off by her.

I have emai1ed since then stating I wasn't ab1e to convey my symptoms accurate1y and wi11 be putting these in a 1etter.
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It’s such a hazard isn’t it?
I know that I can avoid this if I meditate for the few days that lead up to an appointment. I will not be deterred. Of course I can’t do this for almost all of my of my appointments I am too weakened sickened and utterly vulnerable.
 
Ash said:
It’s such a hazard isn’t it?
I know that I can avoid this if I meditate for the few days that lead up to an appointment. I will not be deterred. Of course I can’t do this for almost all of my of my appointments I am too weakened sickened and utterly vulnerable.
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Yes. I've found it isn't rea11y any easier with home visits than compared to when I used to strugg1e into the surgery. But then, I've on1y asked for home visits when my breathing is so bad I've gotten to the state that I fee1 1ike I am drowning.

My GP is pretty good in that she has agreed for me to emai1 my symptoms in 1ieu of a visit when appropriate. I send her my vita1 signs, such as pu1se rate, Sp02, b1ood pressure etc., a1ong with my other symptoms.

But I've never had a home visit for my severe ME/CFS symptoms or rea11y anything unre1ated to my 1ung issues (which I think are quite comp1ex).

Edit - She's a1so put some new meds on repeat unti1 I get seen by a consu1tant.
 
From an email newsletter:
A very successful Count ME In Campaign


THANK YOU for supporting the ME Association’s recent Count ME In campaign. Your participation helped to make it the biggest and most successful national campaign that we have ever done. It was an ambitious project – we have learned a great deal – and we will apply this knowledge to future campaigns...

It was the first time that we had engaged a marketing agency and market research team to position external advertising, ensuring that key messages and information were shared as widely as possible. As a result, we were able to reach more people than ever before!

Download the PDF with the initial survey results





Research recruitment: Are you the parent of an adult child with ME/CFS?
My name is Dr Kate Diggory, and I am an accredited counsellor and lecturer on the Master’s in Counselling and Psychotherapy at Keele University School of Medicine. I am also the carer of an adult child with ME/CFS, and I am interested in exploring other parents’ experiences by conducting a series of interviews and then publishing the findings.


Find out how to take part here



Complete our Website Survey: Autumn Covid Booster and Flu Vaccinations


We have launched a website survey to gather information on your decision and to try and understand the extent of any adverse reactions that might occur from the Autumn Covid Booster or the Flu vaccination. It will remain open until the New Year. Two recent blogs provide detailed information about each vaccine and we've produced template letters should you decide to try and have either of them on the NHS.

Take part in our survey here



British Medical Journal: How can I support my colleague returning to work with Long Covid?
“Remember that no two people with Long Covid will be the same in terms of their challenges, so the approach to returning to work needs to be bespoke and may look different to others.”

British Medical Journal Careers by Abi Rimmer
Read the full article here


Situations Vacant: Fundraising & Development Manager

We need a fundraising and development specialist who can help us meet an increasing demand for the charity’s services.

This is an exciting opportunity for someone who is enthusiastic, creative, responsible, friendly, and caring. It is a flexible position attracting a starting salary that can be increased depending on performance...


Deadline for applications: Friday 22 September.

Find out more and apply here
 
Email newsletter 21st September

The ME Association is thinking about investing in the creation of a new Health App for ME/CFS and Long Covid.


Before we commission the project, we wanted to ask about your own experiences with Health Apps and whether you think there is a place for a new App that aims to support someone with ME/CFS or Long Covid to better understand their illness, learn about management techniques, and be a source of reliable information and tips to help them through their day.


We would be working with the development team that produced the HealthPad App – which has been approved by The Organisation for the Review of Care and Health Apps (ORCHA).

However, the ME/CFS and Long Covid App would be different and tailored to people with either medical condition. The content and language would be approved by the ME Association and the developers would engage with patient and clinician focus groups as a key part of the project.

We anticipate the project will take 12 months and once launched we will regularly review the App to ensure it remained appropriate and up to date. We would also seek ORCHA’s approval so that the App might be recommended by GPs, ME/CFS specialist services, Long Covid clinics, and social care services.

We think the App might be especially helpful when people are waiting for a diagnosis – or have just received one – or for a suitable referral to specialists or when there are no specialists available, and when people are trying to manage their health at home.


We would be very grateful if you could take some time and share your views with us by clicking the link below which will take you to a survey on the ME Association website.


Thank you!

Take the Health App Survey Here


Could I interview you about your experience as a parent of an adult child with ME/CFS?


Study title: Caring for adult children with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS): a qualitative exploration of parents' experiences.


My name is Dr Kate Diggory, and I am an accredited counsellor and lecturer on the Master’s in Counselling and Psychotherapy at Keele University School of Medicine.


I am also the carer of an adult child with ME/CFS, and I am interested in exploring other parents’ experiences by conducting a series of interviews and then publishing the findings.


Before you decide, please read the more detailed information about the study so that you understand why the research is being done and what it would involve.


I am happy to answer any questions you may have before you reach a decision – please email me with your questions or to confirm you are willing to take part: c.j.diggory1@keele.ac.uk

Read the full article here



Reminder: Open Consultation

Improving the experiences of people with ME/CFS: interim delivery plan


“The government is committed to supporting all people living with ME/CFS. On 12 May 2022, the government announced an intention to develop an ME/CFS Delivery Plan to improve the experiences and outcomes for people with the condition.


“We are now launching a focused consultation to gather a range of views from the ME/CFS community on the proposed actions in the Interim Delivery Plan to build a picture of how far it addresses the issues most important to them and help us to identify where we need to go further.


“As the consultation survey is specifically targeting those with experience of living or working with ME/CFS, we are hoping to distribute the survey via relevant organisations and networks to reach the most appropriate audience."


The survey is available online with a deadline 04 October 2023


You can also complete an 'easy-read' version of the survey and make a manual submission in the post which has a later deadline of 30 October 2023. The link below also provides answers to Frequently Asked Questions.

Interim Delivery Plan on ME/CFS


People with ME have been protesting in Cambridge, calling for doctors nationwide to receive better training on the condition.



"Protester Katie Johnstone said there was a “problem” getting knowledge about it into the “medical mainstream”.


"Mark Harper and Ms Johnstone both have ME (myalgic encephalomyelitis) and were protesting outside the school at what they perceive to be a lack of training in medical schools across the UK.


"Mr Harper told BBC Radio Cambridgeshire it was a “very disabling disease” that the medical community had “no training on how to handle..."

Read the Article Here
 
This is important, good on the MEA. It's a difficult thing to think about, especially given the relatively young upper age limit.

The MEA Ramsay Research Fund will be funding detailed examinations of the brain, spinal cord and dorsal root ganglion in at least 5 people with a firm diagnosis ME/CFS who are aged between 18 and 50 at the time of death. We will then review the results and decide whether to proceed with funding further examinations.
  • The upper age limit of 50 is in place to try and ensure that any abnormalities that are found in the brain and spinal cord are not age-related and are more likely to be relevant to ME/CFS.
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Relevant threads:
Post mortem tissue donation and autopsies
ME Association: The UK ME/CFS Post Mortem Tissue Bank and Tissue Donation
 
It's good that they are challenging this research, but I don't think there's any research evidence to support this:
CBT can, however, sometimes be of some help to some people with ME/CFS who are having difficulty in coping with and coming to terms with an illness that has such a devasting effect on almost all aspects of normal daily life – as it can with many other long term conditions.
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I know the NICE guideline says it can be offered, but I don't think it should be repeated without the warning that it can also cause harm, as it did to me.
 
Trish said:
It's good that they are challenging this research, but I don't think there's any research evidence to support this:
CBT can, however, sometimes be of some help to some people with ME/CFS who are having difficulty in coping with and coming to terms with an illness that has such a devasting effect on almost all aspects of normal daily life – as it can with many other long term conditions.
Click to expand...

I know the NICE guideline says it can be offered, but I don't think it should be repeated without the warning that it can also cause harm, as it did to me.
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The Dutch model of CBT for CFS aims for people to no longer see themselves as being ill. It’s like the Chalder model. Not really about helping people come to terms with the illness (though that might be an incidental effect in the odd case).
 
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