I’ll start with the Committee’s many thanks to John Bell for all his work and his interesting, informative and entertaining blogs on our behalf. He has needed to step down, so Eileen and Annie will take over the Blog and bring their extra flavour to it along with our usual Facebook page news and article links from the past month. We are always pleased to have contributions from members, as from Steve this month, and for any feedback about the content of the Blog. 

Wishing you all an uplifting month with the onset of Spring. Take care and stay safe 💜    Paul 

Springtime in Langholm – photos by Eileen 

NICE Guidelines
The revised NICE guidelines for ME/CFS were expected to be published in April, however this is the latest from NICE to the Invest in ME Research Group:
“Dear Stakeholder, Because of the large number of comments received during consultation on the ME/CFS guideline, and the additional work needed to respond to them fully, the publication date has changed. The guideline will now publish on 18th August 2021.”   
                                                  ______________________________________                                                       

There is or are anonymous stone and slate painters brightening up the streets and doorsteps of Langholm. Colloquially known as the Langholm Banksy, residents can ask on the Langholm Facebook page to be ‘stoned’ or ‘slated’ and usually within a day or two a wee artwork is found on their doorstep or street. It doesn’t half brighten the town up, and has been a talking point for most of 2021.
Eileen

Long Covid
Everybody has heard of it and not even the biopsychosocial brigade are denying its existence [but they are now trying to cash in on it]. It’s also generally accepted that as Covid-19 is a virus, then Long Covid is a post-viral illness. What strikes me as remarkable is the number of people who think this is a new phenomenon. Since Spanish Flu [a particularly deadly viral pandemic], there has been [not in any form of chronological order] Poliomyelitis, SARS, MERS, Ebola, West Nile virus, Parvovirus, Ross River virus, Denge virus and most of us afflicted with ME will be aware that among the suspected culprits for causing this awful illness are EBV, Coxsackie B and Glandular Fever [infectious mononucleosis].
Where the jury still seems to be out is whether some cases of Long Covid will morph into ME [or CFS, or whatever label is currently in fashion], although the media seems way ahead of the majority of the medical profession in assuming that this indeed will happen. Like the ME Association, I share that sense of inevitability and the reason is quite simple; all the viruses named above have left in their wake a proportion of survivors who never fully recovered. With Long Covid, it appears that people who only had mild symptoms, or no symptoms at all, are just as likely to be amongst those afflicted. Some with Long Covid have all or most of the symptoms of ME – others don’t. I go by the old adage “If it looks like a fish, swims like a fish and smells like a fish, then you can be pretty certain it’s a fish”. I recall commenting on a group post not long after the start of the pandemic last year that in the long term, the cost to a country’s economy of those who remained ill after the initial stage of the virus had passed would be much greater than the pandemic itself. I read a somewhat stark analysis [from memory, it was from a USA economist] a few weeks back that stated the loss of so many older people would lighten the burden those generations load onto health services and perhaps create a few job opportunities for healthy younger people, but that the younger people who did not recover from the virus would be a burden on government finances for decades. There have been various attempts to quantify this ‘burden’, but I’ll just quote one of them, from Anthony L Komaroff and Lucinda Bateman*. They estimate that of those people unlucky enough to be struck down with Long Covid, 10% will go on to develop ME/CFS, which will double the number of sufferers in the USA in just one year and create 10 million new cases of ME/CFS globally. Sobering statistics that cannot be ignored or brushed under the carpet.
*www.frontiersin.org Will Covid-19 lead to ME/CFS ? 18 Jan 2021 
                                                                                                                                                       Steve

Local Group News

While there have still been problems in some areas for Group 6 access to the vaccine, many of us have now had the Covid jag and with varying reactions. Facebook members have been posting about how they felt after the jab – whether it made symptoms worse or not, and if so for how long. We may conduct a poll about this on our Facebook page when more members have had the vaccine. See article links below for the MEA monthly poll on this.

Here is the link to the Myalgic Encephalomyelitis / Chronic Fatigue Syndrome CPD module, written by Dr Nina Muirhead, which some members studied at our Zoom meeting earlier in March. The module also touches on long-covid and fibromyalgia. We will be promoting the module to doctors and health care workers across the region.

Craft Workshops 

The workshops are funded by Foundation Scotland and are free to DGMEFM Members. These are the last in the series but if there is interest and funding we would like to continue with the project later this year over the winter months.
  • Cross stitch workshop with Eileen, Monday 12th April, 11.30 am
  • Pop up Box Card making with Anne. This is a different Tutor than previously mentioned. Monday 26th April, 1pm.
  • Glass Painting with Dawn, May 12th, 1pm
  • Crocheted Granny Squares with Corrie, May 21st, 11 am
For details see our Facebook page or contact corrie@dgmefm.org.uk

 

Recipes
Click on the headings to download or print the recipes.

Wild Garlic pesto.
A good bunch of wild garlic.
Parmesan cheese
Nuts of your choice, I used almonds, but usually the recipe is pine nuts. They can be a bit expensive so I use the nuts that I like.
Olive oil
Seasoning, salt, pepper, chilli, optional.

Wash the wild garlic well and dry off with a tea towel. Place in a blender or food processor and blitz for a minute or so.
I like a nutty pesto, so I put in a couple of handfuls of nuts. Blitz again. This will chop the nuts but also help break up the garlic leaves.
Then add about 2oz of parmesan. I grate it first as it’s a very hard cheese and can cause the food processor to have issues, unless your blade is really sharp.
Then taste the mixture.
If you think you need more of anything, add it, more garlic you can use cloves of garlic to ramp up the flavour. Add seasoning as you fancy, whatever is your taste. Then add a bit of oil at a time to get the consistency that you like. I prefer a thicker pest, so don’t add much oil.
Then coat your cooked pasta with a good dollop, and serve with pantries Portobello mushroom and kale crisps.

The rest of the pesto can be put in a jar and kept in the fridge for up to 3 days. Mine never lasts that long!

Wild Garlic is just coming up now, so it’s the time to gather it. A rule of thumb is stop gathering once the flowers are opened as the leaves can be bitter then. However the unopened flowers are lovely in a salad, a bit like chive flowers. I’m a great forager. Anything free and natural gets my vote.

Vegan “meat” balls or patties.

  • 1 can of black eyed beans (drained and rinsed)
  • 1/4 cup sunflower seeds
  • 1/2 cup oats
  • 1 med onion finely chopped
  • 2 tbsp tomato puree
  • 2 cloves garlic (grated or minced)
  • 1 tsp ground cumin
  • 1/2 tsp smoked paprika
  • pinch of chilli flakes
  • 1/2 tsp boullion powder (or salt and pepper to taste)

Blitz together in the food processor. Roll into little patties (I got about 14 little patties (about 1-1.5inches diam)

Fry them off.

Yummy 😁

I’m going to put them with a tomato sauce and have them with pasta. They’ll be great with salad in a pitta too.

Enjoy ☺️ Eileen

Article Links

The links below were posted during March by members of our Facebook page. You can read members’ comments about them there. Most of the titles are self explanatory, but if not just click on them to find out more. 

Potential role of microbiome in Chronic Fatigue Syndrome/Myalgic Encephalomyelits (CFS/ME)

Question for Department of Health and Social Care whether they recommend graded exercise therapy for patients with post COVID-19 symptoms.

NICE Draft Guidelines for ME 2020: Invest in ME Research Response

New study shows impaired ability to regulate blood circulation in patients with ME / CFS

Research Interview: Professor Ken Walder

Dutch minister adopts recommendations from ME/CFS research agenda and commissions research programme

Recursive ensemble feature selection provides a robust mRNA expression signature for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome
(Needs translation from Dutch)

Using A Heart Rate Monitor to Prevent Post-Exertional Malaise in ME/CFS

The PACE trial should be retracted, because it was seriously unethical, and the lead investigators continue to deny that.

The ME/CFS/FM Coronavirus Vaccine Side Effects Poll Update + the New Severely Ill Vaccine Side-Effects Poll

Long Covid Is Not Rare. It’s a Health Crisis.

The Medical System Should Have Been Prepared for Long COVID

MEA Statement: Graded Exercise Therapy is not a safe and effective treatment for ME/CFS or Long Covid

When rest may be best for post-viral fatigue

ME/CFS and CBT – a basic error

ME/CFS and the SMILE trial

Women are still branded ‘hysterical’ because of chronic illnesses which are under-researched and under-funded

Physiological Responses to Exercise

Why many of those struck by Long Covid may be suffering from glandular fever: Blood tests on some patients are coming back positive for ‘reactivated’ Epstein-Barr

Effect of Melatonin Plus Zinc Supplementation on Fatigue Perception in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Randomized, Double-Blind, Placebo-Controlled Trial

Rare heart condition that causes dizziness and fainting ‘could be one of the long-term effects of Covid-19’, scientists warn

Long Covid isn’t as unique as we thought

A Stanford scientist’s quest to cure his son could help unravel the mystery of Covid-19 long haulers

ME/CFS and deconditioning

Say What? Attention Deficits Highlight Why Fibromyalgia (and ME/CFS) Are Such Different Diseases

People with long Covid urgently need help. Why can’t we access it?

MEA Monthly Poll: We’re asking about your experiences with the Covid vaccines

The NICE guideline committee and GRADE methodology

April 2021 Blog

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