A nice interview, but poor ME Awarness video in my opinion, well intentioned of course, but not reflective of people with chronic neurological ME. I say this, as it's not CFS awareness week in the UK, it' ME, and ME is classified as a chronic neurological disease.
So we're needing to hear about:
Chronicity and disabling Neurological symptoms. The video had NONE of that. Not one description or reflection.
Henceforth:
My comments are not a criticism of the PERSON, but the POLITICS of the situation, leading to misdiagnosis because of the Department of Health creating 'CFS/ME, which became CFS, which became psych Chronic Fatigue of the Wessely School which then could be referred to as 'ME' - the original disease, now no longer so. (See Fukuda and Oxford CFS diagnostic criteria, vs Ramsay's description of Myalgic Encephalomyelitis).
1.
Underlying problem: The most ill are never represented on TV, and the 90% who don't recover and lead miserable existences are never featured on TV Why?
Because they have ME. A permanent neuroimmune disease, that SCIENCE doesn't have a single evidence based treatment for. Not one! Hence patients, do not recover and even those who think they do (see Dr Bell's study), actually live a restricted life.
This message is not being transmitted on TV.
2.
To Skeptics of ME, the actress did not describe having ME, she actually described having Burnout, leading to increased susceptibility to infection. Burnout is treated with Pacing your life, becoming better motivated to deal with set backs and treating any depression - exactly her story, previously reported in the press. This is not a judgment of her, (I'm not in her body) but it is a fact, that skeptics will KNOW this and be able to point this out LEGITIMATELY (When claiming ME is psychological)- hence the great success of the psych lobby pointing this all out for the last 25 years.
3.
In the future, if TV wants to helps us, we need to increase awareness of ME and not 'any cause' Post Viral Chronic Fatigue states.
4.
In the future, we need to show whole families with ruined lives where the PARENTS either have ME too, and/or the PARENTS have sacrificed their careers and friends, to keep their kids alive. This is NOT shown on TV and needs to be for any 'ME Awareness Week' idea.
5.
We need people on TV who arrive by ambulance as they as so ill. I mean PWME who get sick as children, live on benefits and are hidden away from society for 30 years. There are lots and lots of US, but we are never ASKED.
6.
We need to show the world, what's it's like to be FORCED INTO POVERTY, FOREVER, due to Government POLICY on 'CFS' and 'ME'. UK patients (if lucky) they are on around £6,000 social security a year, if severely affected and if they haven't been blocked from receving payments (usual story for PWME). This amount of 'wage' (social security) is under 1/4 of the average working wage, in which to live off, buy all your medical care (none available) and pay the RENT, Electricity Bill and Food.
To put that in context:
1 year Meals on Wheels is £5,000 not including desert. This means, there is no money left (after food) to pay for heating, electricity, clothes etc.
In my opinion,these are the facts about being CHRONICALLY DISABLED we need to be showing on TV, and hence I rate the video a 0 out of 10, because the actress does NOT live her life in poverty, quite the opposite, yet the vast majority of ME patients ARE forced into poverty.
7.
In ME, the immune suppression is permanent and a core part of the disease and will not resolve by 'Pacing' or becoming pregnant. Pregnancy increases blood volume, hence plenty of women with CFS + POTS report they are temporarily able to do more, when Pregnant. Pregnancy also affects the mind, by affecting hormones, which then surge downwards, hence post natal depression can occur for some
One the actress made 'Life Style Adjustments', such as reducing her busy schedule/stress and demands placed upon, her heallth massively improved. These adjustments are called psycho-social factors, what the Wessely School point out (to their F48.0 Chronic Fatigue patients) are factors keeping them sick (alongside depression or anxiety).
Yet...
Biological diseases can cause depression and anxiety (such as from high cytokine expression) so treating them is often impossible (with antidepressants or CBT) if the patient is simply told to make changes to beliefs behaviours and so forth. It won't work, if there is no mental health issue. NB: Brain damage, can also cause depression and anxiety which is also incurable.
8.
ME makes 1 in 4 people homebound. People with ME 'Pace' and 'Avoid Stress' due to common sense and yet remain immunosupressed, develop multiple co-morbidities (Allergies, Asthma, Cancer, Heart Failure) and some even die.
That is the message that needs to get across on TV, not that people 'recover', because statistically, the figure is 10% or less. (If 10% or less recover, then 90% don't). If 90% don't they are the vast majority, and they should be represented in the media, not the fortunate few who have no idea what it's like to
1) To have work, to earn money.
2) To have freedoms to have relationships, sex, become pregnant and have babies.
3) To not life your life chronically in pain, dizzy, short of breath and unable to wash yourself.
4) To develop peripheral neuropathy and life threatening allergies including Asthma (due to ME).
5) To be prevented from having a baby, because you are too weak to kiss a guy, never mind survive giving birth.
The list is endless.
The above REAL factors need to be explained to the media, and people with ME (who look DREADFUL, not healthy) need to be on TV.
9.
The idea, that PWME look healthy is garbage. People with ME can have:
Spots and Acne (not present when healthy)
Dry skin and Dandruff (not present when healthy)
Palour
Panda Eyes
Aged, wrinkled look as if a heavy smoker
Droopy drugged like eyes (especially if you talk to them for extended periods of time)
Greasy Hair (within 24hrs - 48hrs, the hairy becomes greasy, as it does when you are INFECTED).
Can stammer when they didn't do before.
Can have no idea what you've just said and appear 'lost' in conversation.
Significant weight loss or weight gain - changing the appearance of your body and face a lot.
How does the above make you look 'well'? It makes you look awful
But non of this discussed. So the public think that ME is something you recover from because they haven't met someone with chronic severe ME, and they are never on TV.
10.
Science cannot prove ANYONE with ME fully recovers as the recovered people have had no test and are 'diagnosed' on subjective symptoms.
Conclusion:
Lets represent people with ME for ME Awareness Week, who have RUINED LIVES, NO CHILDREN, NO MONEY, NO HOME, NO FRIENDS, NO Nothing.
This is what ME does to lives, it destroys them.
If i had the options the Actress had, it would be a one in a million opportunity and I would have been blessed by an angel. 'Recovered' or 'mostly' recovered patients (in an incurable disease) are not representations of the average lives of people with ME, and this is what we need on TV the most, to get better awareness.
My 2 cents anyway.
