SPAIN

I interviewed Maria, Gabriela and Teresa from Spain about their battles with ME there; this is what they told me.....

Maria's story

• How did you get ill?

We suspect I got ill after getting either EBV or Cytomegalovirus when I was 18 years old. I spent one or two weeks unable to leave my bed and once I was able an intense pain in my head remained and my sleeping schedule was completelly changed. I had no energy during all the day and only got to be a little active at the latest hours of the evening.

• How were you diagnosed?

The first time I was told I had ME/CFS it was just a doctor who after doing no test at all on me said "this is a case of chronic fatigue syndrome, there's nothing to treat this, you have to learn to live with it and go to a psychologist". I ignored him, as he almost literally told me I was crazy and not worthy of his time and I tried to look for other diagnosis. It took me 3 more years to get to a "serious" CFS diagnosis (I think they haven't still discarded the conditions expert primers say you must watch for) and I feel like during all that time I've only been in the hands of doctors who tried to convince me I was suffering from the conditions they specialize in, but with little to no success and with my precious time wasted while the disease progresses.

• How does this disease affect you?

It has completely destroyed the hopes I had for my life. I got sick just before starting my philosophy degree and I've spent several years trying to attend the classes and the exams with no success. The university has been something I've been dreaming of since I was a child and I got to have a glimpse of it just to see how unable I was to be part of it. I've also lost most of my friends, this is not an age or a time for stability and many of them don't have the time to remember me. I don't see how I'll get out of this hole, I'm housebound and my mother has to take care of me, I cannot cook, I cannot make my bed and sometimes I cannot shower if it's not with her help. There have been times when I also had to be fed by her, I had no energy or the strength to hold my own spoon. 

• Do you know of any support groups or associations in Spain for those suffering from ME/CFS? What are their aims?

There are some patients' associations but most of them don't have any medical expert to help them and they focus in Fibromyalgia. Many of them can't even tell "chronic fatigue" from "chronic fatigue syndrome" and that's a real problem for patient's sake and in order to ask for doctors' seriousness to attend us. 

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?

Not many. I think we could count the doctors willing to be updated at the international level with the fingers of a hand. I've personally reached out to doctors who call themselves experts in CFS and I've tried to give them the IACFSME primer. I got pretty bad reactions from this action. They didn't know about the IACFSME and they weren't willing to check the info they provided or keep the Primer. Totally active ignorance was what I got. 

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?

I don't know. I've read some associations mention a figure of the 400,000 but there hasn't been any epidemiological studies.

• How do doctors and government officials perceive ME/CFS in Spain?

The general opinion is misinformed. I don't think many political representatives are aware of the disease and if they do, as most doctors, they'll think it is the same as fibromyalgia.

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?

Too easy sometimes, (there are doctors who diagnose you with chronic fatigue or chronic fatigue syndrome, or both depending on how talkative they are, once they diagnose you fibromyalgia) and too difficult others, when you are young like I am, you can spend years looking for it and yet many doctors will tell you you're too young to have it once you've been diagnosed.

• What treatment is currently prescribed to those suffering?

In the best cases, nutritional supplementation. For the majority, psychotherapy and exercise. We can't even call it GET. They tell us to force ourselves to be active, run, walk for at least 30 minutes, go to the pool, pilates... The psychotherapy in most cases goes the same way, ignore the symptoms and convince yourself it is your head that is creating the disease. If neither of that works you get the "it's your fault" attitude, especially from doctors. There are psychologists that don't blame you, but they are not easy to find as they have to go against what they are taught in order to support you.

• Are there any specialist clinics for ME/CFS patients in Spain?

I think there's only a public one in Barcelona and maybe there are some private clinics that say to speciallice in CFS and FM but I know patients have concerns about these and don't know how satisfied they are with the treatment. The public one has been denying access to many people diagnoses with CFS and that's been a big issue. Recently Clara Valverde got a judicial sentence that said the clinic had to attend her but the public services are appealing the court decission.

• Do patients receive adequate support? Can they receive disability benefits when they are unable to work?

No, neither from medical community, nor social services and many times not even from family and friends because society is not aware of our disease or its implications for the sufferers' lives. Disability benefits have been achieved some times but with lots of effort and in most cases awful results. We are left by ourselves medically and financially. I've been in a total dependency of my mother myself for two years now and neither she nor I get any recognition or help.

• Are patients and doctors aware of the Rituximab trial, which is currently taking place in Norway?

I think some doctors are. It's been on Medscape after all, if not, maybe I think about 10 doctors would acknowledge it, but now it's been in Medscape they can't pretend it isn't happening. Many patients have known about it for some time now, but only the most veteran and the best informed because of dispair, not the common patient that still think their doctors are informed, the ones that still can't tell chronic fatigue from chronic fatigue syndrome and never have heard of myalgic encephalomyelitis. 

• And what about the controversy surrounding the PACE Trial in the UK?

Yes, I'm sure at least the one that call themselves experts are aware of PACE's polemnic but many just try to ignore it or brush it under the carpet. The conception of CFS/ME as a psychological disorder is well established in Spain and many doctors are not willing to hear any info that contradicts it.

• What changes would you like to see to the treatments currently proposed in Spain?

I would like to STOP THE HARM. We need to be heard, to be seen and to stop being treated like animals and forced to exercise or tell ourselves we are crazy and it's our fault. I'd love to change doctors attitudes, they seem to think they have an unquestionable authority even when they don't get any results, we need them to stop telling us to ignore all the information on this disease that is out there just because they do. 

• What does the future look like for ME/CFS patients in Spain? Is there reason to be positive?

Pretty bad. AWFULLY BAD. But yes, there's a reason to be positive. It doesn't come from our own country though. The reason is that there is great research going on abroad and the reallity of CFS/ME is being known through the actions and protests of people with ME in places like the USA. Once the change is achieved abroad, it'll be much more difficult for Spanish doctors to mantain this situation of misinformation and neglection, so I think we all are waiting for the change outside Spain that eventually makes the Spanish medical (and hopefully, political) community blush.


Gabriela's story

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

​
Teresa's story

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.


Disability Benefits

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’.


Justice System

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.


​Positives….

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.

Feb 2017