I interviewed Maria, Gabriela and Teresa from Spain about their battles with ME there; this is what they told me.....
- How did you get ill?
- How were you diagnosed?
- How does this disease affect you?
- Do you know of any support groups or associations in Spain for those suffering from ME/CFS? What are their aims?
The best help I've found has been in Facebook groups. VIVIR CON SFC/EM was the group that introduced me to the recent research and view of the disease. Now I work with the #MillonesAusentes group that help spread the word of the socio-political problems pwme suffer to the spaniards and the spanish speaking population. Also the SFC-EM Investigación forum is a great source of information and serious discussion of it.
- Are there doctors who would be interested in the research into ME/CFS and the recent scientific advances?
Along the same line I've seen/read many other experts in the country say things that are completely out of tune with the international conception of the illness. They have an strange conception here, they follow the "Central Sensitization Syndromes" theory, in which they classify CFS along with other diseases that sometimes are comorbidities. I've heard really unscientific things with no references said from this theory's perspective and I feel like doctors using this theory are ignoring international advances on purpose. The representatives of this theory also use "Chronic Fatigue Syndrome" and "Chronic Fatigue" as if they were the same.
- Do you have an idea of the amount of people who suffer from this disease in Spain?
- How do doctors and government officials perceive ME/CFS in Spain?
Doctors are dangerously condescendending about ME/CFS. As I said they aren't willing to learn the difference from CFS and CF, they assume it is another symptom of fibromyalgia and a psychosomatic condition. A lot of doctors have laughed at me when I told them I had CFS, others have told me I just needed to get a boyfriend... last week my new doctor said I had to imagine how tired he was having been working since 9am just after I told him I needed a wheelchair to get out of my house and just could walk about 100 steps in a whole day...
- How difficult is it to get a diagnosis of ME/CFS?
- What treatment is currently prescribed to those suffering?
- Are there any specialist clinics for ME/CFS patients in Spain?
- Do patients receive adequate support? Can they receive disability benefits when they are unable to work?
- Are patients and doctors aware of the Rituximab trial, which is currently taking place in Norway?
- And what about the controversy surrounding the PACE Trial in the UK?
- What changes would you like to see to the treatments currently proposed in Spain?
- What does the future look like for ME/CFS patients in Spain? Is there reason to be positive?
Gabriela and her son Alvaro both live in Barcelona and both have ME. Alvaro has been bedbound for 20 years.
I can’t tell you how I got sick, because I really don’t know and my doctor told me that my son is sick as the illness is hereditary.
I’ve been sick since I was 56 years old. My oldest son is 33 years old and has had the illness since he was born but it is quite slight. My younger son, Alvaro, has been the most sick since he was born, always in bed and he is 20 years old. I was diagnosed in 2000 and Alvaro in 2009.
Illness affects us in all aspects of our life, I cope because I am very tough but my head gives me daily pain. My son needs me all the time. Alvaro has lost all his childhood as has been in bed since he was 11 years old with extreme tiredness, pains, sores in the mouth, headaches, dizziness, heat, cold, etc.
The government don't give us any help. Alvaro had 35% of disability and they gave him 250 euros per month but they have now removed everything as according to them my son is already cured. My doctor is a great professional though. He has a good understanding of all this and I feel that he is very close to us.
I have had time for so many years of trying everything I could think of to make me well e.g. acupuncture, pills, painkillers, muscle relaxants - none of that has served me at all. Every day for eight years now I take nothing, when I have outbreaks I take soothers. I give Alvaro tryptophan, Recconet, (the components that include vitamin Q10) vitamin D and some milk pills and when he has outbreaks he has injectable sedatives.
The only thing that can help us undoubtedly to recover is to investigate the disease; we need biological research now!
No te puedo decir como me enferme,por que ni yo lo se....Y mis hijos por lo que me dijo el especialista estan emfermos por pasarles la emfermedad es hereditaria
Yo que recuerde estoy emferma desde siempre tengo 56 años.....Mi hijo mayor desde que nacio...la emfermedad en el es mas leve tiene33 años y Alvaro desde que nacio es el que esta mas emfermito,siempre en cama tiene 20 años
A mi me la diacnosticaron en el año 2000 y a Alvaro en el 2009
La emfermedad nos afecta en todos los aspectos de nuestra vida,yo tiro como puedo soy muy dura y mi cabeza hace que el dia a dia mis dolores y todos los sintomas no existan,ademas mi hijo me necesita al 100x100 pero estoy rota de cansancio y dolores...Alvaro le ha roto toda su infancia lleva en cama desde que tenia 11 años con un cansancio extremo,dolores,llagas en boca,dolores de cabeza,mareos,calor,frio,etc.....
Del gobierno no tenemos ninguna ayuda...Alvaro tenia el 35% de invalidez y le daban 250 euros se lo han quitado todo,segun ellos mi hijo ya esta curado. Mi medico es un grandisimo profesional,gracias a el entendimos todo esto,le siento muy cercano a nosotros
He tenido tiempo durante tantos años de probar todo lo que creia que me hacia bien,pinchazos,pastillas,calmantes,relajantes musculares,,nada de todo eso me ha servido para nada ......Hoy en dia desde hace ocho años no tomo nada,cuando tengo brotes me pinchan calmaantes.....A Alvaro le doy,triptofano,Recconet,(los componentes q lleva es Q10) vitaminaD y unas pastillas de leche de yegua..y cuando tiene brotes calmantes inyectables
Lo unico que nos puede ayudar a recuperarnos indudablemente,es investigar la emfermedad...INVESTIGACION
I had a slow progressive onset of symptoms with 2009 being a very fast decline and managed to get a diagnosis within 6 months by a rheumatologist. That’s where the good news ended. I was told to find something new to do with my life, given a wheelchair and no follow-up appointments.
2 years later I had an awful relapse that left me completely bedbound and unable to eat solid food because of the effort for 4 months. My GP refused to visit me at home the entire time despite having bedsores and losing lots of weight. When I was finally well enough to be transported by ambulance to see a Fibromyalgia specialist he took one look at me and said it was depression and sent my referral back to the GP.
So I had to undergo another shrink assessment to discover I had no mental health issues and managed to get another referral back to the Fibro specialist at the local hospital. Thankfully I saw a different person and she confirmed my SFC (CFS) diagnosis and sent me to a what I thought was an SFC specialist.
There I learnt from the frank speaking doctor that he was in fact a doctor of Internal Medicine and they had obliged him to take on ME cases without having any prior knowledge or training. He only has 1 slot per week at 9am on Mondays for ME patients. Unfortunately he isn’t up-to-date on the current research and is convinced by the positive thinking CBT lark. Also have done GET from his referrals too.
Usually I wouldn’t have agreed to either but it’s the only way to have the slightest chance of getting incapacity benefit.
Virtually impossible to acheive ANY kind of disability benefit for ME in Spain. The process is horrendous.
First, you’re too ill to work so you get signed off. Usually you’re sent to your occupational health/health insurance company. They have a vested interest in returning you to work because in many cases they pay part of your salary while off sick. So after a few weeks, months if you’re lucky they send to you a ‘medical inspection’ run by the state with a report saying you should be working.
Here work the most evil people I have come accross. There’s a metal detector to go through to get in – we’re talking about a doctors office! Anyone accompanying you has to have their details taken too. I’ve been many times, once I was made to try and walk naked round the room helped by my partner after being bedbound for 4 months – I couldn’t walk; accused of commiting fraud and asked if I had tried to scam other countries I had visited too by trying to get benefits and been manhandled and verbually abused when in an extremely delicate state of health. Everybody who goes here has a similiar experience and now they banned people being accompanied in the doctor’s office so you have to face this ordeal on your own.
So at the end of the farce there's a medical inspection where if you can walk on your tiptoes you’re well enough to work or if you say you can’t walk then you’re ‘not collaborating’ (their favourite expression) and equally sent back to work. You can appeal but if you’ve not heard anything back in 7 days then you’ve lost because of ‘administrational silence’.
The next step is to find a lawyer, go to court and ask for incapacity benefit, this takes about 2 years in Catalunya. You need good reports from specialist doctors but they have to be public docs to stand a chance. The lawyer put me in contact with one so you pay to see him privately and he plugs you into the hospital system and gives you a report with their stamp on it. Pay the lawyer, pay the private/public doc, then pay for another private doc to do your independent report for the courts plus private tests to help your case like VO max and cognitive testing. Several thousand euros later you’re ready for court. Usually you lose like me. Last time was a few years ago and quoted that I hadn’t done CBT or GET so hadn’t tried the usual treatments for my illness. Trying again and have my next court date in September with not much hope.
Future Treatment of ME patients
Unfortunately the situation is getting even worse. I am one of the very few people with access to an ME specialist (even though he really isn’t!). My last visit with him he wanted to send me back to my GP because he would be retiring soon. He said that is where ME patients should be treated and that is the route the Catalan government is going – giving short training sessions to GP's, I imagine in a cost cutting exercise. I argued my case and have managed one last visit with him and he’s fobbing people off with more CBT this time group CBT! I printed off the virology blog about the PACE trial and passed it to him but he wasn’t interested in reading it.
The genuine public/private ME specialist I was seeing at another hospital has had to cut all ties with those that aren’t in his catchment area which included me and many other ME patients. Many don’t have a ME specialist in their zone so are left with no one. One patient took it to court and WON and is now allowed back into the hospital. Others are welcome to do the same but obviously it costs time and energy. The Spanish are quite vocal and have a strong fighting spirit. There’s a group (PAICAM) set up here to help people with the justice system and the medical inspections with various articles complaining of the injustices making it into the local press.