NICE: Listen to the People

Share on facebook
Share on twitter
Share on email

As the U.K. prepares to review its national clinical guidelines for ME, it is high-time that the National Institute for Health and Care Excellence (NICE) listens to the evidence showing that Graded Exercise Therapy (GET) is harming people with Myalgic Encephalomyelitis.

Listen to the words of the words of the director of the National Institute of Neurological Disorders and Stroke (NINDS) in the U.S. as he describes the effect of exercise on people ME:

“In ME/CFS, people become incredibly disabled after exercise. It’s not like you and I; we exercise and we’re beat and the next day we wake up and we’re fine with a few aches and pains. Folks [with ME/CFS] will be wrecked for weeks,” said Walter J. Koroshetz, M.D., director of NINDS, in a recent interview on the White House Chronicle.   

NICE has an opportunity to play a major role in improving quality of life for people with ME, but only if it ends the squandering of precious resources currently focused on Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) and as a pathway to healing for ME patients.

Recommending that people with ME undergo graded exercise – as the NICE guidelines currently prescribes – is downright negligent given the sustained reports of harm from people with ME who have followed this protocol. Patients are committing to treatments recommended by NICE in good faith, yet find their condition has worsened significantly.

In part two of this report, Jennie Spotila presents the research showing how exercise causes post-exertional malaise (a severe worsening of symptoms following exertion) in people with ME, and the differences in the physiological responses of people with ME to exercise as compared to healthy controls.

Talking therapy can help people cope with any illness, but you wouldn’t tell a cancer patient or someone with MS to work on their thought process, and then send them away empty-handed.

“It’s pretty clear that the patients who are suffering from this illness are severely disabled,” Dr. Koroshetz went on to say in the interview. “They have a host of biological abnormalities. Yes, this disease has a biological basis. We don’t know what the unifying biology is behind the disease; it’s a big mystery out there to be uncovered,”

ME still lacks a single diagnostic biomarker, and few treatment options (some treatments, such as antivirals, help some patients while do nothing for others). People with ME are forced to experiment on themselves in desperation. Major biomedical investigation needs to begin now to push the science forward in a great leap.

Shamefully, it is the US government (via the National Institutes of Health) that is funding the largest research grant in the U.K  of £1.57 million to continue a longitudinal study measuring changes in the immune system and genetic profile of people with ME/CFS.

It is high time that the UK Research Councils starts a serious investigation into the complex biological mechanisms that cause ME, and stop sweeping the estimated 250,000 British people with ME aside with a pat on the head and this foolish “chin up” masquerade.

Share on facebook
Facebook
Share on twitter
Twitter
Share on whatsapp
WhatsApp
Share on google
Google+
Share on email
Email

Leave a Comment

Your email address will not be published. Required fields are marked *

Latest News

Sign petition To Fix ME/CFS tracking In US!

In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the

Read More »

NICE announces roundtable event to ensure implementation of ME/CFS guideline

NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine

Read More »

#MEAction & 6 ME Orgs Call for CDC to Change How it Tracks ME/CFS

Together with six other organizations, we have submitted a proposal to the National Center for Health Statistics (NCHS) to add myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the neurological chapter of the International Classification of Diseases (ICD-10-CM).  Today, ME/CFS does not exist in the US ICD-10-CM. Instead,  most US doctors assign the code for chronic fatigue

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top