New video: What is ME?

New Video (7 mins) : What is ME? Experts provide a brief overview of symptoms, severity, problems with exercise, guidelines and pacing. Aimed at people to share with friends and family as an introduction to the disease and how severe it can be.

Myalgic Encephalomyelitis (ME) commonly called chronic fatigue syndrome is a life-altering debilitating disease affecting the brain, the immune system and energy metabolism. The defining symptom of ME is that even minimal exertion can cause a flare in symptoms (a crash) that can last for days, weeks or even months.

Severity ranges from mild to very severe. Around 25% are house or bedbound, unable to properly care for themselves, sometimes for many years or decades at a time. The majority of severely affected patients are unable to access any services and are not offered home visits or specialist inpatient care [1]. People with ME have a lower quality of life than people with Stroke, Cancer, Heart disease, Multiple Sclerosis, Reumatoid arthritis [2].

The WHO classified ME as neurological in 1969 but 80% of doctors still believe its psychosomatic [3]. Many doctors still don't know that over the last 35 years there have been over 9000 scientific publications that compared people with the illness to healthy people and they find a whole variety of abnormalities, like energy metabolism [4].

Dr Nina Muirhead ME Patient and Specialist Surgeon in Dermatology - The NICE guidelines “do not fit” with the patient experience and “perpetuated my misunderstanding” of ME by recommending Cognitive Behavioural Therapy and Graded Exercise [5]. NICE is currently updating its guidance for ME and is expected in October 2020 [6]. The Centers for Disease Control and Prevention (CDC) in the US dropped Graded Exercise and Cognitive Behavioural Therapy as treatments for ME in 2017 [7].

Patient surveys consistently report that Graded Exercise makes over 50% of patients worse [8]. “In the absence of effective treatments, patients who are given a period of enforced rest from the onset have the best prognosis” [9]. Pacing was consistently shown to be the most effective, safe, acceptable and preferred form of activity management” [10].

REFERENCES

[1] http://researchbriefings.files.parliament.uk/documents/CDP-2019-0014/CDP-2019-0014.pdf
[2] https://www.meaction.net/2015/08/01/me-patients-have-among-the-poorest-quality-of-life/
[3] https://podcasts.apple.com/gb/podcast/episode-four-dr-nigel-speight/id1374903449?i=1000430064953 (4 mins 50)
[4] http://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf
[5] https://www.rcplondon.ac.uk/news/do-you-really-believe-me
[6] https://www.nice.org.uk/guidance/indevelopment/gid-ng10091
[7] https://www.meassociation.org.uk/20...recommended-treatments-for-mecfs-11-july-2017
[8] https://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full
[9] https://www.mdpi.com/2075-4418/9/4/124/htm
[10] https://www.meassociation.org.uk/wp...No-decisions-about-me-without-me-30.05.15.pdf

 

Transcript

Linda Tannenbaum, Founder and CEO/ President Open Medicine Foundation (Clip)
Myalgic Encephalomyelitis (ME) commonly called chronic fatigue syndrome is a life-altering debilitating disease affecting the brain, the immune system and energy metabolism. Symptoms can appear suddenly or have a gradual onset and include a profound lack of energy that is not relieved by rest. Other symptoms can include unrefreshing, sleep cognitive impairment, dizziness, severe headaches, pain, sore throat, sound and light sensitivity and many more symptoms. There are no FDA approved treatments, there is no cure.

The defining symptom of ME is that even minimal exertion can cause a flare in symptoms (a crash) that can last for days, weeks or even months. (Slide)

David L. Kaufman, MD - Center for Complex Diseases (Clip)
Post-exertional malaise (PEM) is the most distinctive symptom and can help differentiate ME from other diseases. PEM is a worsening of all symptoms after sustained physical or cognitive effort and is often delayed by 8, 24 or even 48 hours post exertion. Patients will often refer to this as crashing. After a crash, it can take days, weeks or even months to return to the previous baseline. Some patients will crash only after walking a mile or spending a day at work, while other patients can crash simply from sitting up in bed or brushing their teeth.

In severe cases exertion can cause patients to become significantly more disabled for months or even years; some never recover. (Slide)

Lucinda Bateman MD, is an ME/CFS physician and researcher. Chief Medical Officer of the Bateman Horne Center (Clip)
This is a worsening of illness under almost any type of stressor, physical, cognitive, emotional stressors, can all trigger relapse with this illness. The duration of the effect can be days, weeks, months and sometimes forever, so sometimes people do not recover.

Life with ME is very unpredictable. The level of disability and symptoms can vary a lot from day to day. People usually need lots of rest before and after an activity and are rarely seen on their bad days. (Slide)

When symptoms are at their worst, often during a crash, people may need support (preparing meals, washing, dressing and eating) for days or even weeks at a time. (Slide)

David L. Kaufman, MD - Center for Complex Diseases (Clip)
An individual patients functioning can vary day-to-day and week-to-week, the snapshot you see can be very misleading. Patients may outwardly appear normal but require extensive rest and recovery from their day-to-day activities.

ME is not a rare disease and affects approximately 250,000 in the UK, 1 million Americans and 15-30 million Worldwide. (Slide)

Severity ranges from mild to very severe. Around 25% are house or bedbound, unable to properly care for themselves, sometimes for many years or decades at a time. (Slide)

Stacey Poole - Health Correspondent ITV (Clip)
It varies from patient to patient. In the most severely affected cases, and I've seen an awful lot of these, patients lie in a darkened room because they can't tolerate light or noise, they're in chronic pain, most of them are unable to move and unable to speak. At the moment there is literally nothing that can be done to help those that are really severely affected. And that's the shocking thing about ME, these families are left to cope all on their own.

The majority of severely affected patients are unable to access any services and are not offered home visits or specialist inpatient care. (Slide)

People with ME have a lower quality of life than people with Stroke, Cancer, Heart disease, Multiple Sclerosis, Reumatoid arthritis. (Slide)

Dr Ron Davis (Clip)
Professor of Biochemistry & Genetics
Director of the Stanford Genome Technology Center
Here's a person that has laid in that bed for six years. He cannot talk, he cannot eat, he cannot look at us, we have a tube into the top of his intestine for feeding. He cannot drink, so we have another line into his chest that goes into his heart for giving him saline. So I challenge any of the government officials to say that this is not real, there's nothing wrong, to look at the data and look at the patients. This is not the only patient like this, there's thousands and thousands of people like this. It's like one of the worst diseases you could have and it's also the least funded.

The WHO classified ME as neurological in 1969 but 80% of doctors still believe its psychosomatic. (Slide)

Anthony L. Komaroff, MD Professor of Medicine Harvard Medical School. (Clip)
Many doctors still don't know that over the last 35 years there have been over 9000 scientific publications that compared people with the illness to healthy people and they find a whole variety of abnormalities, like energy metabolism. That is the ability of the cells to make energy and to use energy seems to be compromised in a wide variety of ways.

Dr Nina Muirhead ME Patient and Specialist Surgeon in Dermatology (Slide)
“Not only was I given a diagnosis of a condition that I didn’t know about or understand, it was an illness I didn’t believe in.” The NICE guidelines “do not fit” with the patient experience and “perpetuated my misunderstanding” of ME by recommending Cognitive Behavioural Therapy and Graded Exercise.

Dr Nina Muirhead ME Patient and Specialist Surgeon in Dermatology (Clip)
I looked on the NICE website and I read that this was an illness that would get better with Cognitive Behavioral Therapy and Graded Exercise and I thought well that's not what I've got because I'm mentally extremely strong and exercise makes me worse. I completely disregarded that diagnosis for myself for a good three months.

NICE is currently updating its guidance for ME and is expected in October 2020. The Centers for Disease Control and Prevention (CDC) in the US dropped Graded Exercise and Cognitive Behavioural Therapy as treatments for ME in 2017. (Slide)

Patient surveys consistently report that Graded Exercise makes over 50% of patients worse (Analysis of 18000 patients from 11 surveys Journal of Health Psychology 2017). Some patients become significantly more disabled. (Slide)

Dr John Chia - ME specialist
Co-author of International Consensus Criteria (Clip)
One of the first things physicians should do is stop telling the patient to go exercise. This is one disease you cannot exercise.

Annette – BBC Breakfast (Clip)
The first graded exercise program I tried was early on in my illness, it made me much worse. Most people I know with ME have exactly the same experience with it.

Emma - BBC You and Yours (Clip)
And then I was given Graded Exercise Therapy and after that I was completely bedridden for two years. I was really really really sick. So Graded Exercise therapy can actually be harmful.

Dr Mark Vink Diagnostics 2019
“In the absence of effective treatments, patients who are given a period of enforced rest from the onset have the best prognosis. ” (Slide)

Pacing was consistently shown to be the most effective, safe, acceptable and preferred form of activity management.” ME Association Illness management survey results 2015. (Slide)

Dr Nigel Speight - Paediatric ME Specialist (Clip)
And the first law should be to do no harm, to not make the condition worse by allowing the patient or pressuresing the patient to do too much.

Dr Charles Shepherd - ME Association (Clip)
So what we would advise patients with this illness to do is to pace their activities, so that they are not exceeding their limitations. They are dividing their physical and their mental activities into little small chunks. What is important not to do is to push on to the point of physical exhaustion and fatigue, because then you are just going to get a prolonged period when you're not going to be able to do anything because of this symptom of post-exertional malaise.

 

I noticed a couple of spelling/language errors in the video. Should these be reported?

 

Thanks let me know and I will make a call, as its live now so difficult to edit are they in the video or the transcript?

 

In the video were the ones I saw. There may of course be others, but I'm not really able to look at it again right now.

 

Excellent, as always. I hope people who organize conferences and other types of public talk are made aware of your videos, they make clear and concise presentations that are ideal for this format.

 

Thanks Richard. I hope so too. I'm not sure the best way to do this. I post in a lot of Facebook groups but it's difficult to grow the channel as my target audience is friends/family/carers of pwme rather than targeting them directly. Some videos are picked up by charities but I guess it depends on the video and if it gets a lot of shares.

 

I would drop this line because CFS means something different and is too easily conflated with fatigue.

 

I thought a lot about this, I included it because it is refered to as CFS in the UK and I didn't have time in the video to explain the history/differences I just wanted to focus on the symptoms severity etc. I will explain the history of CFS in the next video.

 

Thanks for all your help too.

 

Great video @Adam pwme . Perfectly pitched for those with no inkling.

Charities should be using these for awareness raising and education - no need to spend funds commissioning media tools when these , and the Voices videos exist and tell it so well .

@Action for M.E. , @Russell Fleming

 

Thanks Amw66

 

Really excellent work, Adam. Very effective.

 

Thanks Forbin.

 

Sorry for delay - I had a bit of work done on my house and had to prioritise that.

At 3.05 it says 'Reumatoid arthritis".

At 5.12 it says "NICE is currently upgrading its guideline and is expected in October 2020." ?

 

Thanks MeSci. I noticed the Reumatoid and was kicking myself. I think it says

"NICE is currently updating its guidance and is expected in October 2020."

Which seems OK. Or am I missing something?

 

To me it is unclear what is expected. The/an update? (I imagine so.) Otherwise it's saying that NICE is expected in October 2020!

 

Ah OK yes it could have been clearer. But is difficult with limited space. Thanks.

 

@Adam pwme This is excellent! Thank you.