Sunday, November 28, 2021

Save the date...


Dear Miss Potter,

Because of you, we can support people like Tom.

With the increase in the cost of living and being unable to work, Tom needed to apply for benefits. He had previously had a difficult experience with the process and contacted Action for M.E. for help.

“Applying was so stressful it fluctuated my condition. The whole ordeal was cruel having a profound effect on my sense of self-worth. I was dreading having to repeat the process again”

Because of your generosity as a Supporting Member, our Information and Support team were able to listen, support and empower Tom to complete his application at his own pace.

“I can’t articulate how much I appreciated just talking to someone who didn’t imply that it was my own fault, or that I was making it up. The constant grind of having to explain that I cannot accept short notice appointments due to my condition makes me feel unseen. Talking to someone who just treated me like a human being and not someone who was lazy or made of glass was such a positive experience for me as it so rarely happens.”

There is already a huge gap in services for people with M.E. Action for M.E. support services are oversubscribed. With the likely increase in post viral illness including M.E. as a result of contracting Covid-19, we are deeply concerned that people with M.E. like Tom will not get the support they need. By donating to our Big Give Christmas Challenge between 30 November – 7 December, your one donation will have twice the impact to help us support people with M.E. while leading ground-breaking research.

With heartfelt thanks,

Sonya Chowdhury
Chief Executive


PS. Please save the date, and tell your family and friends so they can see their donation doubled, too!

If you have any questions about our campaign or would like to opt out of contact about our Big Give campai

Tuesday, November 16, 2021

Brain fog and how to deal with it.


This was taken from Morning Live today at 0915am on BBC 1.

So what is brain and and the reasons behind it?

Sluggish memory

Concentration issue



Trouble remembering names

Can be mild to very serious

It could be due to thyroid issues.

ME/CFS, yes, we got a mention.

Vitamin deficiencies

Lack of sleep


Having had a baby

What helps to reduce it?

If you are stressed, try to reduce it.

Limit alcohol

Stop smoking

Have a healthy diet

Do strictly fitness, each day. (This is one minutes worth of fitness, you do each day only if you are up to it though)

It is at 0955 on Morning Live, on BBC 1 Monday to Friday.

Check to see if any medication you are on, is causing it.

Do crosswords, puzzles etc.

Only do these things, if able to, and consult your doctor.

I hope this helps.


Friday, November 12, 2021

DecodeME launch news,


Update: DecodeME launches in January 2022.
Thanks for registering your interest in taking part in the DecodeME study into genetic causes of ME/CFS. We have an important update on the start date.
Quick summary: Recruitment will launch in early 2022 in two phases, starting in January. We will email your invite when you can take part and send reminders, so you don’t miss it.

Join our next webinar live on Facebook at 4pm today or register for the recording.
More detail if you have the energy:
We’re pleased to announce recruitment will start in January, and this will happen in two phases.
First, a test phase with randomly-chosen participants allowing us to check everything is working well and get feedback. We will then open full recruitment to everyone soon after.
This is a few months later than we hoped. We know this wait feels like a long time when people with ME/CFS have waited so long for a study like this to happen. Thank you so much for bearing with us.
We are committed to ensuring this study delivers to the highest standard possible, with maximum impact for people with ME/CFS. This means that some tasks have taken longer than expected, while other unexpected issues contributed to the delays.
We know openness is important to the ME/CFS community, so we have detailed some of the key reasons for the delays below:
  • Impact of the pandemic: this impacted supply chains, making it difficult to find key items like cardboard boxes for the spit kits, and made contracting times take longer.
  • Avoiding launching over the busy Christmas period: this is to avoid spit kits being lost in the post and managing holidays/office closures over this period.
  • People with ME/CFS are at the heart of this study, involved in every aspect of the design and development. We have adapted what we’re doing and sometimes slowed things down to be as inclusive as possible.
  • Sickness and impact of loss of loved ones: we have had a number of people from our small team off at times during the project.
  • Needing to work through more data protection issues than we anticipated to ensure your health information is protected to the highest level possible.
  • Hiring more staff for the project, ensuring they are fully inducted while working from home.
However, we remain confident of completing the study on time thanks to the fantastic level of support from the community. We’re excited about launching in the new year.

The good news is we’re making excellent progress, like getting ethics approval and designing the survey and spit kit that are as easy to use as possible for people with ME/CFS. We are also working with the 25% Group to organise support for people with very severe symptoms.

You will receive your invite by email as soon as you can take part. We will send reminders if you miss this.

You may see some people posting about their spit kit online who are part of the first phase before the full launch. If you are not part of this randomly selected small group, you will receive your invite as soon as the full recruitment launches.

We look forward to updating you at this afternoon's webinar - whether you've registered on Zoom, will watch on Facebook live at 4pm, or will view the recording in your own time.
Warmest wishes,

Sonya Chowdhury,
Chair of Management Group.

Tuesday, November 9, 2021

Share your experience of ME


This is from my Twitter account:

To shine a light on the difference in M.E. experiences, we want to invite you to describe your experience of the disease for a new art project. The responses will be collated by Alec Finlay, an internationally recognised artist to create a collective patient-led description.

We have created a survey for you to share your experience of living with M.E. For further information, visit our website here:

Monday, November 8, 2021

Are you magnesium deficient?

 From the Top Saute magazine.

Could you be low in magnesium?

The symptoms are



Low mood

Muscle aches

To increase your levels, you can eat


Dark chocolate, at least 70%

Cashew nuts



Pumpkin seeds

Sunflower seeds


If you are not sure, go to your doctor, also, if you have new symptoms, talk with your doctor.

I hope  this helps.


Friday, October 29, 2021

Nice guidelines for ME 2021


I didn't realise I had 't posted for so long, a lot has been going on, this end.

Here is a summary of the new nice guidelines.


Saturday, September 25, 2021

How to deal with the current gas price crisis


I have just watched the Martin Lewis Show, from this week, and he put the following together to help us deal with current gas price crisis and firms going bust.

Take a weekly, photo of your gas and electric meter reading.

Download the last few bills, from your current provider.

Sit tight, the situation changes by the hour. If your supplier goes bust, you will continue to receive gas and electricity, and will be given a new provider.

I hope this helps.

Feel free to share.