Below is a summary of issues I have with NHS England E-learning Module 1 on ME/CFS as published on the MEAssociation website.
https://meassociation.org.uk/2024/05/nhs-england-launches-new-e-learning-module-on-me-cfs/
TLDR - This underplays the severity of the disease, gets the definition of the disease wrong and fails to explain PEM and its consequences correctly. It also fails to list out what can be done for patients, gaslights them on their history and promotes some harmful organisations. Its really bad and should be immediately withdrawn and redone.
ME CFS learning module 1
Chapter 1
Me is a serious disease, it can be fatal. This underplays the worst 25% of the disease and how it can be life threatening. It doesn’t affect everyone differently there is a core symptom set and a bunch of common co-morbities. Prevalence is wrong, should be at least 1.25 million now due to 50% of Long Covid patients meeting the definition. This list implies symptoms are unknown this is not true.
A
The disease has extremely severe where people can not move, eat and digest food requiring a J tube. This underplays the severity.
We know a lot about the condition and some of its treatments, it is not unknown or mysterious. Diagnosis is delayed due to failure to train doctors in the condition and their refusal to read information on the disease and diagnose it. None of this is the patients fault nor research, there are thousands of papers on ME laying out how to diagnose it and various biological abnormalities. There is no support for ME patients for the diagnosed, most are abandoned completely by their doctors and the social support systems.
B
ME has been used since the 1955 outbreak. In the 1980s the Americans called it CFS and since about 2000 patients have called it ME/CFS. This implies there have been three such outbreaks, it’s actually hundreds of which these are 3 examples there are many more.
C
Me used to be considered biological until psychologists started changing the narrative from the 1970s calling it mass hysteria. In the 1980s research wasfunded to make the disease psychological by the UK government. There have always been significant biological findings showing it is not psychological since the 1950s and even earlier before it was not named. ME/CFS has multiple tests that correlate with the disease, none of them are currently run by the NHS. There are in fact about 100 to choose from that come back abnormal in ME patients. The stigma was created by psychologists denying the science of the disease who have repeatedly used press contacts to create this stigma.
Q it’s all of the above.
They don’t feel like they aren’t believed, they are not believed this is a fact. It’s not just a strained relationship with HCPs they deny ME patients healthcare completely. Their human rights are abused by healthcare workers and its a universal experience.
D
Why are we making a new definition of the disease with 4 symptoms instead of the Canadian or international criteria for the disease? This makes no sense. There might not be an accepted clinical test for ME but there are clinical tests that come back abnormal in most ME patients and it’s a disservice to ignore them and imply all tests are normal, they are not. Indeed even basic total blood count can often show abnormalities as well blood pressure and a variety of immune system tests. Its essential to point out there are tests that often show abnormal that doctors have access to. ME/CFS is not a recent term,it goes back to 1955, with CFS being an attempt by American psychologists to dismiss the disease in the 1980s. Neither is new.
Chapter 2
E 3
This bit about carbohydrates and caffeine is not scientifically sound. No one has suggested this in real science and I have no idea where this has come from but it should be removed. Its dismissive and inappropriate.
Chapter 3
A
This is not compliant with the Canadian criteria nor International and these should be used instead.
2
PEM is a worsening of many symptoms that the patient has and sometimes new symptoms that appear during PEM. PEM can also permanently worsen patients and reduce their function forever.
3
Insomnia is extremely common, “tired but wired” is the most common sleep disturbance and its not listed.
4
Long term memory problem as wells, can not form new and lay down memories properly.
B
1
This can stop someone being able to go to the toilet or leave there bed at all. At its most severe it stops people turning in bed.
2
Sensitivities are extremely painful and most importantly they can cause PEM. This is a very important area for doctors to understand in GP offices and hospitals, ME patients need the lights turning off and sound isolation and they may be sensitive to certain textures that need changing. Failing to do so could permanently worsen the patient.
3
Pain can be anywhere and everywhere it’s not limited to these locations. It can be extremely painful.
5
IBS in ME can be life threatening in two ways.
- The diarrhea or constipation can reach life threatening severities. This may require substantial reductions in the variety of foods and “health” foods may not be so.
- The IBS can also progress to the point where digestion becomes impossible and the patients intestines must be bypassed for food and water, it becomes Gastroparesis and needs urgent treatment. This happens in the most severe patients and in home support is required to get these patients out of hospitals as quickly as possible with J tube fitted.
Mast cell activation is one area that a doctor should consider treatment for it is very common and can relieve these symptoms.
C
“The chance of recovery is better in children”. Citation needed. This does not seem to the case, recovery is exceptionally rare in all people with ME/CFS and most likely within the first few months.
There is no treatment approved at all so what is it that is being suggested for these children here? When the word treatment is used this guide needs to be specific about what treatment that is being suggested, because have claimed there isn’t any what is it that is being suggested here for children but not adults?
D
It would be a good idea to review the research literature and adopt some tests that do come back abnormal like micro clots, nanoneedle and Interleukin and cytokine tests alongside B and T cell function tests.
E
The 4 symptoms are wrong and incompatible with the international definition of the disease.
Chapter 4
Pacing is the key word here and that needs to be layed out as avoiding PEM and staying under the energy budget. Symptoms control needs more definition. Treatments for POTS, IBS and MCAS need laying out alongside pain meds and sleep drugs.
A
The ME services are useless and many severe patients can’t attend them. In home treatment is the only option and this should be laid out. They offer nothing other than CBT and patients should be told this. A GP is a better person to explain pacing or a phonecall to avoid a PEM attack attending a distant clinic. The current system is inappropriate for the disease and causes harm to patients while offering nothing of use. After saying it’s not psychological this chapter seems to show it’s all that is a really offered in these clinics.
B
1
For many all they can do is eat, drink and go to the toilet. Stop underlying the severity of the disease by explaining the most mild. Moderate and below can not consider work or school, most can’t do any of that.
2
Exercise is useless to those with ME who don’t have the energy to live. Stop trying to push it into the limited envelope its inappropriate. It will always take away from something more important in their life.
C
The core disease can’t be treated but many of the symptoms can be and these should be laid out. Pacing use this word because it’s what patients use and it’s the only thing that makes sense and has a lot of explanation elsewhere. Who should and should not be sent to an ME service needs to be laid out and critically how they only offer CBT and still many offer exercise and nothing else.
Chapter 5
1
MEAction is the best patient charity curious why it’s excluded?
2
BACME is wildly condemned by patients and is pushing harmful things about the disease and is not a good source of information.
4
There are number of places like MEResearch that fund UK research from donations since government refuses to fund it. These should be on the list including international ones like Polybio and The open medicine foundation.