A Conversation for Myalgic Encephalomyelitis (ME)


Post 1


you omit the two interventions with a good evidence base - cognitive behavioural therapy and graded exercise. "plenty of rest" exacerbates the problem.

it has been shown membership of ME self-help organisations worsens prognosis.


Post 2

Mag Ratte

IMHO Captaincarrot1942 is a Wesseleyite and therefore not to be trusted further than a person with ME could throw him.

My partner is on more than one ME list & board - if anything these have been v good for both of us.
1) Others with the same condition are better placed to tell you not to push on, because they have learnt the hard way where pushing on got them - a lot worse.

2) CBT is only helpful if you either have a mental/emotional problem (eg adjusting to being ill) as well as ME, or you have chronic fatigue (Oxford criteria) rather than ME/Chronic Fatigue Syndrome (Ramsay criteria). I know of several people with ME who have turned up for CBT and either a) been told that the person running the clinic could find nothing mentally wrong with them, or b) the treatment made their condition worse to the extent that they could no longer continue attednding as outpatients.

Pro CBT and GE research has only been done using ridiculously small samples, for unrealistically short amounts of time (ME is a variable condition, so any trial running less than 9 months is going to be skewed by spontaneous remissions & relapses unless you adjust the baseline) and without sufficient follow up. In short, BAD SCIENCE. For more details, see "denigration by design" (on the ME Action website)


Post 3

kea ~ Far out in the uncharted backwaters of the unfashionable end of the western spiral arm of the Galaxy lies a small, unregarded but very well read blue and white website

Good stuff, Mag. I have to agree - Captaincarrot's post is ignorant and prejudicial and is typical of the misinformation surrounding ME that actually makes people's lives worse. Those kinds of attitudes reinforce the idea that if someone just pulled themselves together they'd be ok, whereas 'pulling oneself together and getting on with it' is the worst thing that someone with ME can do. The people I've known with ME who have recovered were the ones who slowed down, rested, and made lifestyle changes that supported their recovery. They also had significant support in their lives.

Graded exercise is useful for some people at certain stages of their illness. But it's incredibly detrimental to people who are unable to tolerate that added stress. One of the diagnostic criteria for ME is post-exertional malaise meaning that if someone with ME exercises to the point to fatigue it makes them more ill and they have an extremely extended period of recovery (days rather than minutes or hours in healthy person). This is in direct contrast to people who are tired but otherwise well or some people who are depressed where exercise can make them feel better.

I agree too that there is much bad science around ME. Most research I've looked at uses widely variable definitions of ME, and often confuses ME with chronic fatigue. From what I remember the pro-graded exercise stance comes from research on chronic fatigue rather than ME.


Post 4


there has been some recent research published in the states showing a link between ME/CFS and the Herpes virus. A number of volunteers were given a medicine to treat herpes and many of them showed dramatic improvements in their condition.

As my partner suffers from this we have learnt a lot in the last 12 months, the most important of which was getting the correct essential fatty acids, which meant ditching 7 years of veganism and eating the right food for her metabolic type, as she was tested and found to be a protein type so effectively had been starving herself of essential protiens for the last 7 years, longer if you count the previous 20years of being a vegetarian. I really would reccomend undergoing a metabolic typing test.

As for CBT, well we decided that was not the route, especially as the DR offered it but it would only be through a trainee or online! What has helped is a technique called Emotional Freedom Therapy.

Also, due to coming across a Professor Perrin's work, who happens to be one of the leading researchers in the UK on CFS, and finding a local Chirpractor trained in the "perrin Technique" who is helping to get the lymph system circulating again.

Graded exercise was tried early on but caused much pain and suffering, and on seeing Proff P, was discontinued on his advice, along with hot baths!

Regular gentle exercise, such as walking is helping to maitain strength and energy.

Joining the local ME/CFS support group was regretted as they seem to be led by people who have given up any hope of getting well and are quite down on any prospects of treatment, research or improvement in their health.

As a returning member to h2g2 I'll try a do an article or 2 on these subjects in the near future!

Key: Complain about this post